Hypothyroidism Any experience of it ?

The Thyroxine you've been given is synthetic - but, it's molecularly identical to the substance your body produces, but is not, in your case, producing enough of. You've probably got months of up and down to go, yet, before feeling better - almost everybody ends up getting to the right stage/dose, with this, though. It's not a serious condition...more like a background chemical nuisance.

One thing I'd like to add, however, is...*DON'T REST ON THAT!* Just because somebody thought "Thyroid" and the test upheld their suspicions, doesn't mean that you're yet finished in trying to find what else might be wrong with you!

If you're suffering from any other (I'm really only talking about mental health) condition, just dealing with the thyroid situation, right now, might well mean that you are missing other causes that need finding and which can be treated and/or therapied! Give it some serious thought! Feeling better might be closer than you think!

Well I must thank everyone for responding on this post, and good to see that it's helping others as well.

I saw the GP this morning and although I felt like I was having an 'up' day I was actually tired as had been awake on and off since 3 in the morning. My appointment was 9 so maybe that was on my mind, but sleep disturbance is one of my issues. When she asked how I'd been I told her, honestly, that I felt I'd become worse despite the meds.

She has doubled the dose of Levothyroxine and given me 3 months supply when she will check my bloods again. My blood results were not despre4ately bad.

Annoyingly I should have made a note of them but will call the surgery on Monday to get a note of both tests results just for my own information.

So I'll start the new higher dose tomorrow and cross my fingers..

Another here been on varying dose of thyroxine since my twenties, that alongside occasional steroids for whatever reason I now have osteoporosis. So please be aware this happens. Unavoidable I suppose.

*that

Appetite, I'm sorry to hear tjst

Grandmabatty

I've been on Levothyroxine for years. It takes a while for the correct dosage to be sorted. I have lost my eyebrows and most of my body hair as well as really thin hair on my head. Make sure you have more bloods done to make sure the dose is enough. I was quite low when first diagnosed but thought it was maybe the menopause

I am in the same position with my hair etc. I seem to gain weight almost daily although due to IBS I eat practically nothing. (And having Coleorectal Cancer in my 20's. Cancer which ofcourse was all in my head! )Over the period of the 50 years since I was diagnosed the GP hasn't managed to prescribe the right dosage of Levothyroxine to help in any way. Each day is a struggle unfortunately.

TerriBull

Welcome to the under active thyroid club bridie54. I was diagnosed with the condition when I was in my mid 40s, a time when I felt myself becoming so sluggish and lacking in any sort of energy, I was at a loss to explain it other than I felt I was wading through concrete and small tasks required a monumental effort. Before that time, I was completely unaware of the condition or how the tiny thyroid gland is so pivotal to the metabolism. I expect there will be others along to talk about how their experiences with Thyroxine, we've had various threads on it on GN Unfortunately for me it's never been a silver bullet in providing the energy boost I thought it might. However, everyone is different and for some it obviously does improv their condition and you may well be one of those, so hang on in there. I'm in my early 70s now and vitality or lack of it has been with me for some time, but like many, I have different days, some where I feel almost normal. I can never pinpoint what actually precipitates the overwhelming feeling of lethargy.

I am in exactly the same situation. I was diagnosed in my late 3o's (I am now 75) and I suffer the same problems as Terribull unfortunately.

I'm interested in reading everyone else's experiences. Like many I was diagnosed over 25 years ago now and originally started on 50 mcg but am now on a dose of 150 which is fairly high.

I'm lucky in that my hair remains thick and I still have my eyebrows although sparse in parts there are plenty of products on the market for the purpose of at least giving the illusion of making them look thicker. Although I'm quite happy to lose body hair, I've long since eliminated having to use a product for their elimination. Neither do I suffer from feeling cold, the menopause put paid to that. My symptoms have always been and remain a feeling of sluggishness different days, different energy levels with no defining factors as to what triggers lack of vitality, I do go to the gym and have recently purchased a walking pad for home to exercise on, but I can't say any of that is an enormous help.

I don't think it's uncommon for some of us on Levothyroxine to say that it doesn't always make a difference in treating our symptoms. Although I know if we didn't take that it would be detrimental to health. In the US there is an effective form of it called Armour which unlike the synthetic version is derived from pigs, but is more expensive. When Hillary Clinton was running against Trump for presidency and she made her medical records available, he accused her of being physically unfit, I remember seeing she took Armour for her under active thyroid.

One of my late friends was a retired GP who was concerned that hypothyroidism was frequently mis -diagnosed as clinical depression. The latter is a less tractable condition , as hypothyroidism can usually be sorted by upping the patient's thyroxin level.

Agree that 20 mcg is very low. I had my thyroid removed 20 years ago as it was very enlarged and also overactive. Since then I'm on 100 mcg a day with blood tests every 6 months to monitor. Seems to be stable and I feel fine.
Some thyroid problems are due to autoimmune conditions, which can cause other problems which the thyroxine won't help! Unfortunately docs often don't look for the underlying cause of thyroid problems- even endocrinologists!

Good luck today! Thinking of you.
Another Hashimoto’s diagnosis here. For me it was my father who was diagnosed and I had the test long before I had any symptoms.
It can take a while to get the right dose of levothyroxin for you. It can also change over the years- you will need yearly blood tests to keep on top of it.
Your thyroid controls so many body systems it’s really important to get the right dose. GPs tend to start with a low dose as too high initially can be a shock to your body. Dad was put on a high dose because his symptoms and blood results were exceptionally bad. He wasn’t allowed to drive, travel more than 20 minutes and had daily checks with the practice nurse for a month because he needed an urgent higher dose which was potentially dangerous.
20mg is very low. I suspect you will get another blood test today and your dose will be increased slowly.

I’ve been taking Levothyroxine since 1994. Prior to diagnosis I was feeling very down and I couldn’t understand why. The crux came when I fell asleep in a meeting in work (and it wasn’t a boring meeting either).

After weeks of tests, I was finally diagnosed as having Hashimoto’s Disease - an hereditary autoimmune condition where the body’s own defence mechanisms attack and destroy the thyroid gland. Consequently I have no natural thyroid function and I take 200 units of Levothyroxine daily.

My son, who is 47, has just been diagnosed with Hashimoto’s, and my grandson who is 17 has been tested - but is clear at the moment.

Lots of good advice here for you, OP. Hopefully it will make you feel reassured regarding some of your symptoms.
Naturally, you'll be eager to feel lots better, but after taking your first lot of pills prescribed for only about 4 weeks, it may not be surprising to find that your next blood test could show that the dose needs some tweaking/changing in order to bring about some real improvement. Patience may be needed for a while!

Meanwhile always remember to take your Levothyroxine with a glass of water a good half an hour prior to any food or drink (first thing in the day). Calcium, for example, will interfere with absorption, and eating or drinking could easily affect the performance of the dose you are prescribed. Secondly, because your whole being is regulated by the workings of your Thyroid, don't be dismissed or feel that your comments or complaints about this aspect of your health are not being given adequate attention by your GP. Making your own appointment to see an Endocrinologist would probably be of great benefit to you if you feel that this is a health problem which, for you, needs more support or investigation - and especially if you continue to feel unwell or constantly out of sorts.

A few years ago, I spent some months suddenly feeling absolute rubbish and couldn't understand why. The levels of thyroxine were correct according to the results of my latest blood test. I eventually complained to my Doctor and asked to be put onto different medication, amazingly on the very day that the French Government had started action against the drug company producing their generic Thyroxine tablets. Thousands of French women had been raising hell with regards to how their tablets were affecting them - as a result of unknown additives/fillers/bulking agents having been added to those particular pills. These random additives were what was affecting the dosage AND the results for patients. The drug company had omitted to inform the Government bodies responsible and therefore Doctors did not have the information either! I was put onto a completely pure (Thyroxine + Water) capsule by an Endocrinologist and have never looked back.

I hope that with a bit more time you will benefit from positive improvements in your condition.

I’m another with an underactive thyroid. I have been on a low dose of Thyroxine for over twenty years. The UK has the widest reference range for “normal” in Europe, which means there are thousands of, mostly, women, who are constantly feeling under the weather with a suboptimal thyroid. It is a surprisingly common condition and l agree that it is not always as well treated as it could be. Hope you feel better soon.

bridie54

After seeing GP for at least 2 months she did a blood test and Hypothyroidism was diagnosed. I was relieved to get a diagnosis as couldn't figure what had changed me so much.

I've been on Levothyroxine 4 weeks now and get results of my second blood test later this week at an appointment but I can't say I've found any improvement from taking them. In fact I would say I was feeling increasingly worse.

The MH aspects are the worst. I feel increasingly low/depressed, emotional/tearful, am avoiding going out, (cancelled a birthday lunch with a friend today) unmotivated, can't concentrate ...... you get the picture.

Prior to January, I was volunteer gardening 3 sessions a week, attending 2 craft groups, enjoying my own garden and crafts at home. Basically kept myself busy.
Has anyone experience of this condition? I know meds can take a long time to take effect, but any help/advice would be greatly appreciated.

Hi
I was diagnosed with an under active thyroid almost 28 years ago . It takes a while to find the right level of thyroxine for you. I take 125 mcg daily.
I get tired and yes get low spells .
I also take a bit d tablet a day as well.
I’m currently going to slimming world very slowly losing weight but it’s coming off gradually.
A under active thyroid is quite a common thing, as many of the others have mentioned.
I also take biotin to help thicken my hair .
Be kind on yourself and go with the flow . It will take time for you to adjust but you will get there.your not alone in having this .

I've been on medication for several years. The written advice is that you take it in the morning and avoid it within one hour of having caffeine. Personally I find having mine of an evening around 8pm - still avoiding caffeine- suits my body better. I'm not saying I'm jumping around but I just feel better than when having medication of a morning.
On the other hand it could be that you need an additional medication - Liothyronine. Drs are reluctant to give you that as it is expensive . It all depends on your T3 & T4 levels.

I’ve had hypothyroidism for over 40 years. It all started when I was 31 and the four children had German measles which I got as well. That left me with Hyperthyroidism and I was on tablets for that for two years. Then everything was fine until my first husband died very suddenly. A goitre developed in my neck, shock they said, and I had it removed with most of my thyroid gland. A couple of years later I was diagnosed with Hypothyroidism. I’ve been on Thyroxine since. I would like to say that most Drs idea of normal, carry on as you are doing is very different from what is optimal. I keep my TSH under 1 if possible, though I find it does vary if I am stressed about anything. There is a very good forum in Health unlocked which can advise on the extra vitamins your body need with hypothyroid. It’s free, and I’ve had the best advice I’ve had from there. It’s also good to read
Stop the Throid Madness, I think that is what it is called, you get it on Amazon, and that tells you a lot about the condition that most Drs don’t even know unless they are specialists. Good luck, you may have a fight on your hands with your Dr.

Generally speaking and certainly in my experience hypothyroidism is not treated well by the NHS. In general practice there seems to be an assumption that dishing out levothyroxine will deal with it. This is not always the case. The active hormone is T3 and is made in the body by conversion from T4 which is all that GPs will prescribe. The usual starting dose is 50 mcg so I am not surprised that the OP is not feeling well. Once treatment with levothyroxine is started the thyroid effectively ceases to function and 20mcg is nowhere near enough to compensate. The dose should be increased in stages until symptoms have disappeared. NICE guidelines suggest that an adequate replacement dose is 1.6 mcg per kilo of body weight.
The Thyroid UK website is a useful resource and hosts an extremely knowledgeable forum.

I’ve been on Levothyroxine for 30 years. I found that the GPs don’t treat the individual just the readings from the blood test. Regular blood tests and constant tweaking of my medication levels frustrated me. I was functioning quite well at 150mg and then the GP reduced the dose and I became dysfunctional, although it was very difficult to explain because there wasn’t any specific symptom, just overall I knew I wasn’t functioning properly. My argument is that the blood results should be used as a guide in conjunction with how I am feeling and coping. Just because there is a hormone level that most people fit into doesn’t mean we should all be squeezed into that band, because nobody knows what my normal hormone levels were before I developed hypothyroidism.
I used to be a contact for the British Thyroid Foundation and most enquiries were about GPs not considering how the patient was feeling on a specific dose.
My hair never got any thicker so I started wearing a wig and admit that it made a big difference. I received so many positive comments from strangers assuming it was my own hair.
I managed to lose weight, cut out the carbs, and am very pleased with the results.
Life goes on. Don’t beat yourself up because you can’t do as much as you used to do or do it as quickly. You do learn to adapt and accept the changes.

I’m like Terri I have never felt the full benefit of thyroxine. I have been seeing an Endocrinologist for 5 years and they have just signed me off as they can’t do anything further for me. I’m almost 80 so no real hope of regaining any energy.

On the plus side I make the most of the time I feel awake eg go to Tai Chi, walk every morning, keep my weight down by calorie control. Sleep for 40 minutes during the day. When I feel exhausted in the morning I do a meditation and I either fall asleep or feel a little more energised at the end of the session.

However many people benefit from thyroxine so I hope you are one of those people who do.

My GP started treating me for hypothyroidism 30 years ago. I've been through a rough time for years with many adjustments in the Levothyroxin. My doctor finally referred me to an Endocrinologist 5 years ago. That was another setback because there was a 6 month wait for an appointment. It turns out now that I have hyperthyroidism now. On top of that thyroid eye disease. If I were you I would go to a specialist instead of just your GP. I think I have suffered for years because I should have had more specialized treatment.

DianaLouise

your dosage seems very low. Also a good tip I take my thyroxine if I wake up about 6ish so that there is a good gap between that and my BP meds. You should leave 30mins after taking thyroxine before eating

I was diagnosed at 16 then taken off Levothyroxine at 23, back on after I had an operation and half my thyroid removed, thinking it was cancer but it was not. now alternate between 50 and 75 mg. alternate dates which is what works for me. My THS is now level, but I still feel tired, very cold but also have Raynaud's, which often goes with an under active thyroid. Have you been checked for that? do your extremities die off even in the summer? I take a lot of medication for a scoliosis so feel constantly doped up and sleepy. I still volunteer full time + hours as I am better when busy.

your dosage seems very low. Also a good tip I take my thyroxine if I wake up about 6ish so that there is a good gap between that and my BP meds. You should leave 30mins after taking thyroxine before eating

My under active thyroid makes me feel cold all the time! I hate it!
I’m on thyroxine. I’ve been on it for years.
Being cold, tired, low moods are many conditions -
Just adapt your life accordingly but do try and go out even if you’re ’not Feeling up to it’!
Good luck

I have been on Levothyroxine for 30 years. Its never quite the same as having a fully functioning gland and I have completely lost eye brows and have frontal hair loss but at least it has kept me alive. As another poster said, I feel sorry for women who would have died in the past due to this condition.