My first presentation With hypoT was 3 months ago and I was unbelievably sick with Severe muscle spasms in legs and chest fluid on my abdomen, and face, 10 kg weight increase TSH 157 T4 0.03 T3 0.01 Prolactin 630 vitamin F low old bloods also showed a previous EBV infection.
Was started on 150 (they were even considering 200mcg at one point) then dropped Me to 100 when my TSH became oversuppressed To 0.02 and T4 became 21. However even then I was looking puffy and huge. Have been on 100mcg for six weeks and my face looks puffy like a moon, losing an insane amount of hair and have gone up 2 dress sizes. I’ve been exercising daily and adhering to a gluten free and paleo diet, supplementing with zinc selenium vit D rhodiola and ashwaganda
Would be most grateful for some advice on what to do because I just feel like I am not even close to winning the thyroid battle
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Freeny_e
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Can you please add reference ranges to your blood results - these vary from lab to lab - and also double-check them as they are not "usual" results. You can edit your post using the "more" button on the right.
It's very unusual to be started on such a high dose of levo - I'm guessing you aren't in the UK? But something is clearly not right with your level of meds at the moment.
Thank you so much for the tips will upload them, I’m based in the UK and I am a doctor myself but I think my case is very unusual and severe that a team of GPs and specialists Have struggled to manage me
Wow. those are the worst blood test results i've ever seen. no wonder they started on 150mcg straight away .
I think, given how low the hormone level was , and how high the TSH was, you had probably been developing this problem for months before you felt it.
The body tries desperately to compensate at first, hence why you may not have felt it until it couldn't compensate anymore.
You need to be prepared for it to take a while before your body has enough replacement hormones ( Levothyroxine) again, and to become settled on a correct dose for you, and then for your body to recover from such a massive swing in it's control mechanism.
Make sure you get given a further blood test once you have been on 100mcg for 6/8 weeks, (and get the results and [ranges]. If you post them here , folk will help with interpretation.)
Don't allow them to just leave you on 100 for a year now if the result's say'normal'.
'Normal' is usually 'not good enough' in practice. You need 'optimal for you', not the general population!
I find that it takes more than 5 weeks to feel settled after even a small dose change, so i'd advise you to wait at least that long if not a few weeks longer , before deciding how you feel on a new dose.
In your case , given how extreme your hypothyroid state had become, i think you need to be prepared for some ups and downs for a few months while your body regains some stability.
They were so extreme, I’m a doctor myself and I was shocked at my own bloods! I have never see a labs like my own and even my GP was very concerned. That exactly what I feel! I think ‘normal’ isn’t good enough and it should be titrated according to optimal level. I am due some repeat bloods next week, and hopefully I can adjust my dose accordingly I guess it’s just my own frustration because I am looking for a quick fix to halt my body and physical and energy changes..and unfortunately it’s just probably going to be like that :/
It takes the body a while to catch up with blood results sometimes. You have been very ill and very deficient in thyroid hormones so, while those hormones are showing in your blood, your body may not yet have adapted to the change.
Both rhodiola and ashwaganda are controversial with some sites stating benefits for thyroid and others stating that they are to be avoided. Personally I would not take them as I do not know what they contain and whether or not my body needs what they have. My problems were triggered by taking tablets which unknown to me contained additional iodine. I was not iodine deficient so this sent a susceptible thyroid off the rails.
The exercise that you do at the moment needs to be gentle. Exercise makes demands on our levels of thyroid hormones particularly T3. Because you have been deficient you may not have enough to cope with physical activities and for your body to readjust and heal.
Recovery is slow with major thyroid issues and it takes time to adjust doses and to then wait for that adjustment to take effect.
We do need to be proactive so I would suggest that you become as knowledgeable as you can through this site. Also keep records of blood results and make sure that FT3 is monitored as well as TSH and Ft4 as its levels are the most important and often ignored by health professionals.
I’m a doctor myself I had to literally battle with my Endocrinologist and GP to get them to do reverse T3. I keep getting this response of ‘give tour body time on the normal thyroxine and see how you go, but having read the literature I can see that Some people just don’t respond to T4 and need T3 as well. Physically I just feel that my body is not responding to the Medicaiton and is just worsening
Will probably do some extra reading on Rhodiola and Ashwaganda I had read the thyroid protocol book by Dr Isabelle Wentz who advocates these supplements but maybe I just need to let my adrenals adjust first because they definitely over compensating
I rarely get to say this and mean it, but in your case it's fair to say "thing's can only get better" cos i don't think a FT4/FT3 below Zero is possible in 'the living'.
Try your best by whatever means available , to get an FT3 included with FT4 and TSH in all future tests . I think you can tell more from that combination than from rT3, (and they'll think you've been talking to nutters on the internet if you keep mentioning rT3, and it's expensive! )
You might want to make your own mind up an the subject of the relative risk's of Low/suppressed TSH in relation to reducing dose of Levo.
Guidance for GP's/Endo's only gives the headlines , but the details show a different story ie. there are no increased risks if TSH is low , but not suppressed at between [0.04 -0.4mUI/L]
STOP EXERCISING! You're in no fit state to be doing anything much at the moment. You have been severely hypo, started on too high a dose of T4, and your body will be in shock. What you need right now is rest, not exercise. And, the exercise won't affect your weight, anyway. It's water, not fat.
You've only just started this thyroid journey, you've still got a long, long way to go before your body adjusts and settles down. It takes some people years to find the right dose. You were very, very hypo. And, frankly, I'm surprised you're still alive! You can't live without thyroid hormone, and you had practically none in your system, if those numbers are correct.
Did you really mean vit F? Or did you mean vit D? Wouldn't be surprising if that was low. Have you also had your vit B12, folate and ferritin tested? Because they're bound to be low, too. And, they all need to be optimal.
adhering to a gluten free and paleo diet, supplementing with zinc selenium vit D rhodiola and ashwaganda
I'm not sure you ought to be on any sort of a diet right now. If you feel better without gluten, fine. But Paleo? Far too restrictive. Your body needs all the nourishment it can get right now. Forget about the weight. That, quite frankly, is the least of your problems at the moment.
If you are supplementing with vit D, you should also be taking magnesium and vit K2 - MK7. But, I agree about the ashwagandha and rhodiola. They could lower your cortisol, and that's probably pretty low at the moment, anyway. I honestly don't think they're going to do you any good at this point, even if they don't do you any harm.
I can’t reiterate what Greygoose says enough! Please stop exercising! If you have to get out for mental health reasons then walk! Meander! No pacing! I am sure I did more damage and exacerbated my autoimmune condition by exercising through hypo states. It puts undue stress on our systems. I also was prone to damage, my foot, my knee, my shoulder. Liagment damage is so much more long lasting that broken bones. I was gaslighted by my GP’s (ie told it was all in my head and I just needed to diet and exercise).
Feet up, light short walks if you are going stir crazy. Feed your body.
I agree wholeheartedly with what Grey Goose and NWA6 say about exercise and diet at the moment. Recovery at the moment needs to happen at a cellular level. Don't try and force it . you may well do more harm than good . Regular short walks and excellent nutrition are the best advice for the time being.
I'm astonished you could still walk at all with results like yours were !
Allow a few months for your cells to recover and start working properly again, and only then look at weight etc. Once you are stable on the right dose, your body should get rid of it by itself.
What you've got at the moment won't actually be normal 'fat' anyway , it's quite a lot a water and swelling, and it's happening because your metabolism has slowed right down due to lack of thyroid hormones.
Now that you are replacing them , your metabolism will speed up and sort out the balance when it's healthy enough to do so.
I totally understand you need to feel like you are 'doing something about it', so put effort into cooking and eating the best quality food you can, and avoid eating any rubbish.
Thanks everyone for your help I’m so grateful For the tips and advice. I am just struggling to manage my own condition because I have all this medical information in my head because I’m a doctor and then on top of that I have medical colleagues telling me different things, the GP and endocrinologist haven’t been agreeing on my case and all the Scientific literature is giving conflicting opinions.
I think I am just going to stop trying to overmedicalise myself and just take it easy with diet and exercise and just heal as suggested
You have certainly won this weeks award for 'being closest to a coma while still being upright'
I wish i could say i'm astonished that a doctor is getting such dodgy treatment and lack of support/information , but sadly 108,000 people on here know only too well how 'thin' the current medical training on 'The Thyroid' is.
When you do recover, please remember us lot on here , and remind your colleagues that at Least 15% of Hypothyroid patients do not recover on Levothyroxine alone, and have had to do their own 'medical degree' on the subject, while being unable to function, in order to improve.
Please hang around here, it really help's to be able to speak to others who know what it feels like.when most of the world thinks you are' just a bit tired'
(And i hope you will forgive us if you come across negative attitudes to Doctors expressed here. What you see is the result of our experiences with some who find it easier to write 'fatigue ' on the notes and offer an antidepressant and a prescription to eat less, rather than do the research, or perhaps they just don't have time.)
I never thought I’d say this but I am more sorry for your condtion because you are a doctor! I have such prejudice against doctors that I thought it would be hard for me to empathise but actually I do empathise 🤗 when the science doesn’t match the symptoms must be the hardest of all places to be. Good luck to you☘️
Was it a GP who started you on Levothyroxin? I thought they gave intravenous T3 if your results were that low. That would have got you feeling better straight away while they adjusted the Levo to the correct dose.
They supposedly should have and in my opinion I would have benefited from it! however according to the Acute medical guidelines they only give IV T3 if I am in myxdema crisis and attached to a cardiac monitor (which I almost was)
There are a couple of golden rules you need to know :
1) If you have a test result of anything at all which is in range it doesn't mean that it is perfect for you and you will be well. Some results, particularly thyroid hormone levels for Free T4 and Free T3, are individual to you.
Person A may do well with a Free T4 which is 75% of the way through the range and Free T3 50% of the way through the range.
Person B may only do well when both Free T4 and Free T3 are 60% of the way through the range.
Person C may take T3 only, and do well with Free T4 at 5% of the way through the range and Free T3 at 90% of the way through the range.
Finding your own sweet spot can take a long time, and some people never find it, probably because treatment guidelines for thyroid are extremely rigid and very patient-unfriendly. We aren't allowed to try T3, and TSH is the only thing that matters to most doctors. Patients know that the most important measure for well-being is Free T3 and that is hardly ever measured. Too high and people feel hyperthyroid, too low and they feel hypothyroid.
We generally tend to refer to results being X% of the way through the range because it is independent of reference ranges.
2) Nutrient deficiencies are practically universal in the people who come to this forum. One of the commonest symptoms of hypothyroidism is low stomach acid. Low stomach acid causes acid reflux, heartburn and indigestion. It also reduces absorption of nutrients from your food.
If you search the forum you'll find that the most commonly mentioned, tested and found nutrient deficiencies are vitamin B12, folate, ferritin, and vitamin D. I would be happier if people added serum iron to that list, but you can't have everything. Low magnesium is also very common, we also need vitamin K2. Calcium is important but only if it is below range or above range.
You will probably have to accept that in order to stay healthy you are likely to end up on a cocktail of nutritional supplements for life due to poor absorption of nutrients from the gut.
There are always exceptions to everything, and your gut might work absolutely fine - but you would be a rare bird if that turned out to be the case.
I wrote a version of this post for another member who was complaining of severe cramp and I've copied it because I thought it might help you. It applies to anybody with muscle cramp, spasms, twitching, and benign fasciculations.
Your very low thyroid hormone levels will be one cause of several for this problem. Low nutrients are a common cause too.
Iron and ferritin [iron stores] - Low levels of either or both of these will cause or add to a problem of cramp. If you can get an iron panel done and post the results and reference ranges then we can suggest how you might help yourself.
Note that most of us feel best with a ferritin that is approximately mid-range.
Magnesium - Low magnesium is extremely common in just about everybody on the planet. The most commonly used test for magnesium is a complete waste of time and money because it tests only the magnesium level in the blood, but doesn't test what is hidden away in other body tissues. If the level of magnesium in the blood falls low the body will steal it from other body tissues to put it into the blood. So a blood test can show acceptable levels in the blood, but you could still be deficient in every other type of body tissue.
If you supplement magnesium and take too much then, as long as your kidneys are functional, your body will remove the excess magnesium via the urine. So supplementing magnesium in sensible amounts is safe for people with healthy kidneys.
The usual dose of elemental magnesium to take is roughly 300mg - 400mg per day. There are loads of different magnesium supplements - some good, some useless. Depending on the type, they can be put in the bath to soak in, sprayed into the mouth, sprayed onto the skin, swallowed as tablets, swallowed as powders dissolved in water. Different supplements have different properties and it is up to you to decide which appeals to you the most. Personally I take magnesium citrate powder in water and drink it - I found the pills too big to swallow. It is a very mild laxative which I find helpful. If you are prone to diarrhoea then you should avoid it. Magnesium supplements make some people mildly sleepy or relaxed, so taking them in the evening or just before bed is often recommended.
Potassium - Look for a list of potassium-rich foods, find something you like eating and keep it in stock. If you get cramp try eating it. An alternative is to buy potassium supplements, but these must be taken cautiously (if at all) because excessive potassium is dangerous and can adversely affect the heart rhythm. This link is worth reading, including the comments :
Sodium - Having too low a level of sodium in the blood can cause cramp and muscle problems. This is one of those things where just trying a small amount may help. If I want to try extra sodium I will either put a quarter teaspoon in water and just drink it, or I will drink a cup of this (the top ingredient is salt which is sodium chloride) :
Vitamin D - This also has effects on muscles. If your level of vitamin D is low you'll find lots of info on levels to aim for and how to supplement it on the forum. Posts and replies by SeasideSusie are well worth reading on the subject.
I very rarely have cramp these days. I used to get it several times a week. I keep my iron levels as close to optimal as I can, I take magnesium citrate powder almost every night of the week, and I eat a more nutrient-dense diet than I used to.
Iron/ferritin is one of those things that needs planning - you can't just take an iron pill when you get cramp and expect it to work, and you should always aim to keep iron levels as close to optimal as possible for many different reasons. But the other things I've mentioned can be taken when you are hit by cramp and they usually work within 5 - 10 minutes.
I had severe muscle spasms in my chest some years ago. It was like indigestion, heart burn and acid reflux on steroids - it was so excruciating I wondered if I was having a heart attack.
I think, with hindsight, it was caused by a combination of untreated hypothyroidism, severely low nutrients and having zero stomach acid.
I would agree with the people who were saying you should stop taking these. They are referred to as "adaptogens". They are useful in the right circumstances, but my goodness, there's an awful lot of bunkum written about them.
It is important to test cortisol before attempting to change your level. There is a lot of overlap between symptoms in low cortisol and symptoms in high cortisol. If you get it wrong you can cause yourself a lot of problems.
Several years ago I was convinced I had low cortisol based on my symptoms and took a supplement which was supposed to raise it. Just before I started the supplement I sent off a 4-part saliva test through the post.
For the two weeks I took this supplement I was angry, irritable, sweating, barely sleeping, almost homicidal. When I got the results of the test I'd done it turned out three of the four results were over the range and the fourth was over 90% of the way through the range. Lesson learned...
I had overactive thyroid about 10 years ago which resulted in the radioactive iodine which brought it below. I’m on thyroxine now and all stable. But took a while so 3 months is not long
Probably a useless response, but before thyroxine, natural desiccated Thyroid was the only thyroid medication . My daughter was desperately ill when I finally took her to see the late Dr Skinner. Thyroxine gave a small improvement, but he changed her to Armour Thyroid and years and years of ill health disappeared. That was over 20 years ago and luckily her NHS GP still prescribes her the 4 grains a day that she needs. At least if you could get some liothyronine added it , this could be the answer to help you on the road to recovery.
This reads to me like your having a bad reaction to medication have you checked your supplents are ok to take whilst taking Thyroxine some herbs are not suitable you can google to check.
So you need to get FULL thyroid and vitamin testing after 6-8 weeks on constant unchanging dose (And unchanging brand) levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Have you had thyroid antibodies tested?
Had any vitamin tests?
Add vitamin results and ranges if you have any
As everyone has said .....you need to be kind to yourself and pace yourself very carefully at moment
It’s going to take months rather than weeks for levels to settle and to start to feel normal
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Medichecks often have special offers, if order on Thursdays
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
You may need to go to several different pharmacies before finding brand levothyroxine you need
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
Why are you considering adding rhodiola and ashwagandha? As far as I know, they are adaptogens used to treat high cortisol. If you have not had your cortisol levels tested, you should not take anything that can interfere with them. And I have never heard of them being recommended for hypothyroidism. What you need, first and foremost, is to find a dose of levothyroxine that will result in optimal free Ts (provided you are a good enough converter). And, as others have said, optimise vitamin and mineral levels.
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