Hypothyroidism Any experience of it ?

I've been taking levothyroxine for over 30 years, it does take a wee while before you feel the difference, I thought I would loose weight right away, but it didn't happen,my hair did get a bit thicker, but everything seems to take time. you'll probably get more blood tests, and perhaps your thyroxine will either be increased or decreased, until your thyroid levels get to right setting, even with thyroxine, it's still not easy to loose the weight, and I still get tired very easily.

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'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

Just to add that before I was diagnosed ,I got up one morning and could hardly walk , I had no strength, my niece had to drive me to the GP, he told me that the blood test I had 6 months before showed that my thyroid was under active, but obviously that had been ignored.I suppose the longer you wait for treatment, the longer it will take to get back to some normality....hope you feel better soon.

I was diagnosed about 15 years ago, and had exactly your symptoms as well as weight gain and extreme tiredness. While it takes a while for the GP to get the levothyroxine dosage right, eventually you will absolutely feel so much better.

I went from struggling to get over a style back to full fitness. My mood lifted, I stopped feeling cold and lost quite a bit of weight too. I have an annual blood test and have occasionally had the dosage tweaked.

Hang on in there, it just takes time - the main thing is that you now have the diagnosis and can start treatment.

sorry, should read 'stile'

I have been taking thyroxine for over 30:years. Since the correct level was achieved, I have been fine. I am in my eighties now and still,pretty active though have had to reign in my gardening but that is because of arthritis.

I’ve been on Levothyroxine for 20 years now. I was started on 50, then 75, then upped to 100. It takes a few months, probably nearer a year, to get the right dosage and you will get regular blood tests to find that out. I didn’t feel a huge difference immediately, but after about a year I definitely felt an improvement. The weight was the most difficult thing, as I was then almost 50 and it becomes so much harder to shift excess weight the older we get. My SiL was put on tablets and complained that she would now have to take them for the rest of her life. I said I was quite happy to take such a simple and effective solution and that if it’s for the rest of my life, then so be it. I feel so sorry for women down the centuries who would have been dragging themselves about, with scant hair and no energy, not knowing what was wrong. I’m just so grateful that someone found out the cause and the remedy in my lifetime.

Thank you for all the responses on here.

I don't know how you all survived waiting months to get the meds dosage right and started to feel better. Like I said, I'm only 4 weeks in with meds and struggling but I'm only on 20mg dosage.

TerriBull I so understand what you mean about not knowing what the day will be like. Today has been one of those down days for me. The early morning waking and morning are the worst. I didn't dress till lunchtime and then just sat around all day either crocheting or watching tv. Am pleased that I managed to empty the recycling bin! But then feel guilty walking past the weeds in the garden that need pulling up and I'm one of those people who find weeding almost therapy.

Weight has not been an issue - so far. And neither has hair loss. My eyes get irritated and now I've developed a mouth ulcer but don't know if that's connected.

Moth62 I echo your sentiments for women in the past. Not knowing what was wrong with me was awful. How you cold live a life with this beggars belief. And the first thing I was offered by the GP was anti-depressants. I refused them pressing for the cause of all my symptoms. I think if I had been seen by a more experienced doctor the diagnosis might have been made sooner because when I googled (as you do) I was a text book case. I'd no experience or knowledge of it before I got it.

Roll on Friday to see what's next.

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.

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

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

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.

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.

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.

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.

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 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.

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.

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’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.

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’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.

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.