On the 20th Dec 23 I came off of my dose of 150 Levothyroxine completely (cold turkey). It genuinely felt as if I was being slowly poisoned. I was constantly shattered, I couldn't think straight, i was so, so sad, looking forward to nothing :(, i had developed the sorest / itchiest rash on my back and chest and to top it off my hair was thinning at an alarming rate and I had a rash to my scalp. At night I had trouble going to sleep and staying asleep and would occasionally get cramp in my calf muscles.
I was diagnosed with an underactive thyroid just over a year ago. I had gone to the doctors with a knee injury and he sent me for NHS blood test as a precaution, I think because of my age and as I was not a regular visitor. As far as I knew I was OK and didn't have any symptoms that were worrying me but I got a call from the doctors to say TSH was 21.0 mIU/L Ref Range 0.27-4.2 mlU/L. (No other thyroid or vitamin levels were given.)
I had an underactive thyroid and was prescribed 25 levothyroxine as a starting dose.
After an initial prescription of 25 Levothyroxine I was gradually elevated to 150 Levothyroxine that I have been on for about 6 months and my last TSH level on 11th Dec 23 was 2.3mlU/L. No other thyroid or vitamin levels were given.. Im a male, just turned 60, weigh approximately 100kg and am 5ft 11 ins tall. I would take the levo with a glass of water about 3 or 4 in the morning and take a few supplements with my breakfast about 8.00 am. The supplements were B12, Zinc, Vit C, Vit D, Magnesium, an a Centrum multi vitamin for over 50's men.
Brand names of the Levothyroxine the last few prescriptions have been a mix of Teva & Accord.
Below are the test results as my Levothyroxine were increased. No other thyroid or vitamin levels were given.
2.30 mIU/L
Date:11 Dec 2023 10:26 GMT
Reference Range:0.27 mIU/L - 4.2 mIU/L
1.85 mIU/L
Date:20 Apr 2023 08:15 BST
Reference Range:0.27 mIU/L - 4.2 mIU/L
15.1 mIU/L
Date:28 Feb 2023 08:15 GMT
Reference Range:0.27 mIU/L - 4.2 mIU/L
9.10 mIU/L
Date:05 Jan 2023 08:45 GMT
Reference Range:0.27 mIU/L - 4.2 mIU/L
21.0 mIU/L
Date:22 Nov 2022 08:09 GMT
Reference Range:0.27 mIU/L - 4.2 mIU/L
7.77 mIU/L
Date:31 Dec 2021 10:25 GMT
Reference Range:0.27 mIU/L - 4.2 mIU/L
I was never told to fast or not take my levothyroxine before a test. So being a novice at blood tests I probably ate and had coffee an hour or so after my levothyroxine as I had normally done and then went for my tests.
I was pretty sure that quitting Levo would be frowned upon by my Doctor but having just phoned the surgery and been given the first available appointment of 6th January 2024 I was truly desperate and decided to stop the medication and see what happened.
I carried on with the supplements and ruled as much as possible out of my diet that might be inflammatory. I'm basically carnivore at the moment.
My mood, energy and general feeling of wellbeing gradually improved and by the time I saw the doctor I felt fantastic compared to how I felt on the 20th of December. It was honestly like night and day.
I visited my Doctor as arranged on the 6th Jan 24, he prescribed me a steroid cream for the rash on my chest and back (which has worked wonders) and said he thought I was absolutely wrong to stop the medication but understood why I had done it if feeling so bad. He did not understand why stopping taking Levothyroxine would make me feel better and said to arrange an NHS blood test for the end of January and see where we go from there.
This I did along with arranging privately for and Advanced Thyroid Test by Medichecks the day before.
Medichecks test was at 9.30 in the morning. I had not eaten since lunch the previous day, drunk only water and not taken any supplements for the previous week. Results below.
Currently still feeling pretty good, perhaps a little more lethargic but not sure.
My hair is thin but what I have left feels healthier. The rash on my scalp has nearly gone. I am sleeping so much better too.
CRPS HS 2.27 (mg/L 3)
FERRITIN 112 (30-518)
FOLLATE 11.6 (7-35)
B12 150 (37.5-188)
VITAMIN D 42.7 ( 50-250)
TSH > 100 ( 0.27-4.2)
FREE T3 1.7 (3.1-6.8)
FREE THYROXINE 2.5 (12-22)
THYROGLOBULIN ANTI 1,196
THYROID PEROXIDASE ANTI >600
Any help explaining the results, advice on what to do now and what supplements I could take would be much appreciated. I'm as puzzled as my Doctor, I fear the worse but am terrified of having to go back on the Levothyroxine. Thanks for taking the time to read this.
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It sounds like you could have been reacting to excipients in the levo hence the rash etc or possibly levo doesn't suit you and liothyronine would be a better option...are you dairy intolerant? You say you are mostly carnivore at present... it could be the lactose in the tablets and swapping to a lactose free one might have helped?
Not unusual to feel better when you stop but it doesn't last... your store of fT4 is now so depleted and your thyroid has obviously not been able to kick back into action
So it has been about a month since you stopped and your levels have completely panned and the extremely high antibodies show that your thyroid is under attack
Your low Vit D is enough to make you feel pretty dire, aim to get it to 125
Wow Eeyore many thanks for the quick advice. I do feel a bit lost as where to go with this. Would you suggest that I start back on one of the levo pills I have been prescribed until I get a doctors appointment? I have 50mcg Accord & 100 mcg Teva.
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)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Your extremely high thyroid antibodies confirms cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s
Would suspect rash could be gluten related
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Thanks SlowDragon, your advice is so appreciated I cant tell you. I will start taking the 50mcg tablet from by Accord in the morning and phone the doctors.
I stopped Levo on 3 separate occasions in early days …..30 years ago…..I had been left on totally inadequate dose …..and yes felt poisoned
First time …I got away with it ….just felt flat and hypo….picked back up slowly but GP wouldn’t increase dose beyond 75mcg
2nd time stopped a year later …..very unwell…took 2-3 months to recover …..referred to local diabetes specialist….pretty useless …..got dose increase to 100mcg
3rd time ….another year later……extremely unwell….wheelchair/bed bound/dramatic weight loss etc. Took at least a year to recover ……never ever did it again!
But I got my, previously refused, referral to thyroid specialist endocrinologist…..dose increased to 125mcg
Vitamin levels were dire …..not told or treated
Only learnt the importance of vitamins and food intolerances when joined the forum in 2014
TiggerMe suggested that you might be reacting to one of the excipients in the levo, and it might be lactose as it’s cleared up with a mainly carnivorous diet. If that’s right then you’re better off reintroducing the Teva rather than the accord as Teva is lactose free. You could cut it in half to get a dose of 50 rather than go straight on to 100. Though as you’ve already been told, many of us don’t get on well with Teva. I think a suck-it-and-see approach is needed.
Good shout Beads... worth requesting Vencamil which are lactose free, I get on well with them, they only do 100mcg at the moment thought they split easily in half
Hi Beads, I have just got back from the Doctors, before reading your advice and she has prescribed me Liquid Thyroxine to see if that solves the problem. 100mcg starting dose but looking to raise to 150mcg if necessary. Fingers crossed I get on with it. What do you think?
Thanks SlowDragon. My prescription went through to my local Tescos yesterday and the lady said Ill order it and if in stock the order will go through and will be here by 12 noon tomorrow. It went through and she said that all was fine. I'll wait and see what happens today. Fingers crossed there is no change.
Phew..... Just thought Id give you a quick update SlowDragon.... Ive returned from the pharmacy with two bottles of liquid levothyroxine... Preparing to be a new man🤞🤞
Be prepared to feel worse, before you feel better……that’s completely normal and to be expected
The rest of your endocrine system has to catch up …..typically many people feel worse weeks 4-7 after any dose change (or brand change)
As you’re trialing liquid, remember many people on liquid find it better to split the dose
Meanwhile work on improving low vitamin D with vitamin D mouth spray……or if you take vitamin D tablets…..remember at least 4 hours away from taking either dose of levothyroxine
Thanks once again SlowDragon. Ill let you know how things progress. Amazing that a Doctor does not give you a heads up as to how things might progress. I would probably have panicked if I hadn't read your note, if wellbeing started to slide.
Most GP’s (and endocrinologists) are absolutely clueless
They are taught in a 2-3 hour class at medical school that hypothyroidism is easy to treat ….just give a little pill daily…..get result somewhere vaguely within range ….bingo
The reality for many patients is very different, especially when cause is autoimmune ….as yours is
Over 90% of primary hypothyroidism is autoimmune. 9 out of 10 autoimmune cases are female. Being male they might take you more seriously than “hysterical females “
Many (most?) Hashimoto’s patients need to be on high enough dose levothyroxine to lower TSH below 1
Most important results are ALWAYS Ft3 followed by Ft4 and absolutely essential to maintain GOOD vitamin levels
High percentage of hashimoto’s patients find strictly gluten free diet beneficial or essential
It's all so totally ridiculous as very many forum members are refused liquid T4 in primary care - despite evidence of absorption problems and need to be referred to the endo hospital to sanction the need for anything other than the cheapest treatment option.
This post code lottery based on financial constraint rather than medical need is alarming.
I have no experience of the liquid and prefer a glass of wine -
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
Multivitamins never recommended as likely to contain iodine, not recommended for anyone on Levo as it contains all the iodine you need. Iodine especially not recommended for anyone with Hashimoto’s
Test correctly 6-8 weeks after each increase in dose
ALWAYS do thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Most important results are always Ft3 followed by Ft4
Many people when adequately treated TSH will be low or suppressed
ALWAYS test TSH, Ft4 and Ft3
Test vitamin levels at least annually
Vitamin D twice year
Trial gluten free and dairy free
once Ft4 is at top of range, all four vitamins at GOOD Levels…..and quite likely dairy and gluten free……
If after all this Ft3 still remains low …..then look at getting T3 (liothyronine) prescribed ALONGSIDE levothyroxine
I cannot believe the help and advice SlowDragon, you're far too kind 😀 I will read all the advice and make a new start in the morning. A lot of changes to make. Fingers crossed the levo doesn't start killing me again before i see improvements
I would make appointment with gp and ask to start back on liquid thyroxine instead of tablet. I tolerated this slightly better than tablet form as I too felt i was being poisoned. I also had allergic reaction to all tablet form where my tounge would swell up so much along with tingling sensation in it. I now take T3 only and have for 9 years.
can see you were taking Teva brand as 100mcg tablet
…many people can’t tolerate it ….a few love it
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
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
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
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).
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, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Hi SlowDragon, I have taken my 50mcg of Accord Levthyroxine this morning and have just got back from the Doctors who kindly agreed to prescribe me Liquid Levo which the Pharmacy have ordered and it should be in tomorrow. She has said to start at 100mcg and arrange blood tests for 6 to 8 weeks time to see where I am. Is that good advice?
This site is" flippin" incredible, where else could you go to get such great advice from people who have walked a mile or two in your shoes before....... and so quickly. Thanks to you too sparkly. I think my GP (really nice fella but doesn't seem to know to much about thyroid) is going to be overwhelmed with all my information from you all.
Have fun when you try and relay a few things you have learned here infront of your GP. They will just look at you blankly. To be fair to them this challenge is broader than the UK and its an institutional resistance due to lack of trials (and a little systemic arrogance), In 20 years and with the help of AI it will all be different but for now GPs will pleasantly useless on this condition. You have to do your own research, be a strong advocate for your own health and go into your GP with a clear view of your own plan. But just dont try and educate them! Best approach is nudge. Good luck, you may get worse before you get better but suggest dont go cold turkey again - we have all tried it once (or twice). p.s. It takes many read throughs to absorb all the information so be patient.
Thanks CapnM, still trying to work out how to present the info I have been given. My nudging can sometimes look like a push, so have to be careful 😂 Still bemused because I feel OK! Thank goodness I have had such great advice because who knows what I would have stumbled into.
I wouldn't waste your time. GPs work by blood tests and productivity (doing things) not outcomes. Most of the stuff here is completely off grid for GPs, they are time poor and rarely step outside the immediate frameworks and guidance they are bound to. The NHS isnt a meritocracy. But do have a plan. It does not hurt to mention that you have been researching Thyroid UK and British Thyroid Association guidance and have a pathway that you propose to follow. But outside prescription drugs and blood ranges they will not pay much attention to vitamins, giving up gluten etc. Basically unless you get good clinical evidence that you have something else, just take the Levo and do all the things the admins have set out, be preared to get worse before you get better (sorry)but do stick to it. If you dont have improvement in a acceptable period of time be prepared to trial T3. You will know a lot more by then to make this judgement. You might find your GP supports this but like myself and many others you may have to source privately. As you a man near my age have a look for my previous posts on the link between thyroid and sleep apnea, its relevant to women of course but men of a certain age have far greater representation for sleep disorders and thyroid and sleep disorders have a feedback loop. cheers,
I will digest, note and follow the advice from you kind people that have given your time to advise me. I will post some updates as things progress. I know so little and doubt I will ever be able to give the in depth advice of members as knowledgeable as SlowDragon but if my story helps a little, it will be a tiny payback .
Just to say that I've felt like this and now use other meds, not Levo. I completely understand how you were feeling but trust me, you need to be taking something for your dodgy thyroid and you've had some tip-top advice. This is a hard journey, not least because you need acceptance ( that you have a crappy thyroid) and patience (any increases can only be done slowly and for someone with little patience (me) it's a toughie. One of the things I found most difficult to cope with was the ignorance of my GP (and many endocrinologists, too...) Good luck!
When I was diagnosed Rapunzel I thought, OK......... I haven't really looked after myself and I deserve something, I thought red wine was good for me I feel OK. Bad things were what people of my age were meant to feel, how bad can a few pills be?
Oh dear how wrong I was.? Last year was poo and Im not looking forward to this year unfolding but with the kind help of people on here, fingers crossed ill feel better soonish.
Dude, red wine is good for you! Just not a bottle a night! I get ya with the, I deserve something, but this isn't it, and you don't deserve anything. .. What you have can be sorted but it just takes a L O N G time for some. As someone who regularly drank a bottle of Laphroig every weekend (not on my own, mind, but certainly an equal partner in the debauchery) in my thirties and stuffed £000s up my nose as well, I get it. Don't beat yourself up - your thyroid is doing that for you, ATM. I'm a good girl now and just a doobie here and there... ticked off that since my diagnosis, alcohol does nothing for me anymore - bit of a be'ach really, apparently a thing when you have a dodgy thyroid. Bummer.
😂 Nice reply Rapunzel. Endless bottles of red wine have long gone along with my George Michael hair doo and my Miami Vice pastel shirt and jacket with my sleeves rolled up 🙄. Fun while i lasted though 😁
When you first went to the doctor and a blood tests confirmed hypothyroidism -
did the NHS not run the thyroid antibodies then and find the cause of your hypothyroidism ?
You 're likely in information overload now -
You are looking at an auto immune disease that attacks the thyroid and possibly your eyes -
You might like to read around Dr Izabella Wentz's research and suggestions as I read many Hashimoto's patients find her work helpful -thyroidpharmacist.com
Hi pennyannie, no the only test was for TSH, they didn't check anything else to do with the thyroid.
Thanks for the link, I will take a look. All the advice and links are helping me understand where I am and giving me a path to follow that I didnt have before visiting here.
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