I'm really struggling mentally with a decrease in my levothyroxine dose. I have hypothyroidism and for years I would need an increase, my highest TSH was 6.
I went for my annual blood test at the beginning of February and my TSH was 0.06. The GP has reduced my dose to 100 from 125 but I feel worse now that I did before I reduced my dose.
I'm really hoping this will settle down but right now I'm switching between severe anxiety one day ( I'm talking chest pains and the shakes) and depression the next. It's having a huge impact on me especially in work and I'm even considering having to take some time off!
It's been 10 days, i thought it would settle down but if anything i feel less able to cope than I did at the start. Has anyone experienced anything similar and can offer and advice?
Thanks in advance
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HazelRoxie
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So we can offer better advice, can you share blood test results (with ranges in brackets) for:
FT3
FT4
(In addition to TSH provided- if you have these)
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
Unfortunately many medics simply look at TSH not FT3 and FT4. We really need to see these to have a comprehensive picture of your thyroid health.
Some members have refused the decrease based on TSH alone, asking for full thyroid test to be completed…so maybe worth asking GP for this whilst remaining on the higher dose. Perhaps agree to trial a smaller reduction to 112.5mcg if GP is adamant.
What time was your blood draw? An early test (prior to 9am) gives highest TSH (patient to patient tip). Forum advice is to take daily Levo AFTER the blood draw.
Thank you so much for getting back to me. My GP only tested the TSH, I am looking at getting blood tests privately, as far as I'm aware that's the only measure that's ever been tested. Do you have any recommendations on who to use?
My blood test was at 8.30 in the morning but I took my dose before I went in.
I'm not surprised that my dose was wrong, I was struggling with my eczma, energy levels and cycle for about 5 months before the test (but Dr's refused to test until my annual review). I just didn't expect such a strong set of side effects to the dose decrease. I know when I've had an increase before I've struggled but it's only been for maybe 3 days, this is an extended period and doesn't feel to be improving either.
Highly likely TSH would rise if Levo taken after blood draw.
The link I attached previously includes popular blood test providers (eg Blue Horizon/ Medichecks, MMH..) Definitely get thyroid antibodies and key thyroid vitamins tested if you’ve not had these. We don’t recommend supplementing unless these have been tested/ shared with us for further advice.
Ideally, you need to be in a consistent dose of Levo for 6 weeks prior to testing. I would consider returning to your previous dose if you felt well on this and have full thyroid tests on this (& have sufficient medication). Alternatively, take 112.5mcg daily (if the 25mcg drop is too much for you) and test in a couple of weeks.
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
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 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) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
It's such a mine field, I've had hypothyroidism for years but didn't know anything of the above. I've just done what was suggested by my GP. Which in hindsight is should have challenged more.
I am on thyroxine made by hill cross, it's been that way for 2 years. I moved GPs the year before than, it was a different supplier but I'm not sure what.
We are trying to start a family (7 months in, given the thyrpid challenges that's not surprising me now). I've been taking the procieve tablets which does include biotin. What sort of impacts does biotin have aon the blood test?
I can't remember if I've ever had a full vitamin panel done, I have had my follate but that was a number of years ago.
I will look at getting my thyrpid and vitamin levels tested privately and then I can post the results.
Your proconcieve probably includes iodine too ……extra iodine not recommended when taking Levo as Levo contains all the iodine you need
Stop any supplements that contain biotin 3-5 days before any blood tests as biotin is used in lots of lab testing equipment and taking biotin can falsely affect test results
Suggest you get vitamin levels tested now definitely vitamin D, folate, B12 and ferritin
If not testing thyroid levels you can use these tests run through NHS private testing service
I am on thyroxine made by hill cross, it's been that way for 2 years. I moved GPs the year before than, it was a different supplier but I'm not sure what.
Hillcross is just a box ……inside are different brands
Hillcross 25mcg is Teva brand
Hillcross 100mcg is Accord brand
Teva brand upsets many people
Many people find Levothyroxine brands are not interchangeable.
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
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free, but 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
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.
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).
when only small percentage of your dose is Teva it can be difficult to tell if the brand is causing an issue
The way to eliminate is to try using 50mcg Accord cut in half for 25mcg
Or cut into 1/4’s for 12.5mcg daily
Use sharp craft scalpel to cut and get weekly pill dispenser for spare 1/4’s
Gluten
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 as per NICE Guidelines
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
You can tell my brain isn't right as I forgot I've been celiac tested. It was negative but I am gluten sensitive, wheat seems to be a particular challenge.
I have done a strict gluten free diet a few times but have found it doesn't seem to affect my thyroid.
I now have a very low gluten diet, I will include a small amount but avoid it as much as possible. It's become pretty normal now, I didn't realise it was so prevelant in those with hypothyroidism mind.
I also have asthma, eczma and hayfever so maybe naively assumed that it was related to the immune response from those conditions rather than my thyroid. I don't believe I've had my antibodies tested but the test I've ordered includes TPO.
I have managed to keep myself well for 12 years on NDT which I sourced from the States, but now have to take Levothyroxine, have come under the care of my GP and realised the power doctors wield over thyroid patients. They just decide arbitrarily what dose you should take irrespective of how you feel. Trying to source a lactose free tablet is the devils own job. I looked up the EMC and found 3 companies, which produce lactose free tablets, but my chemist is struggling to locate the medication. Will probably have to post on here for advice soon.
The EMC is diabolical. It pretends to be complete but isn't. At least two makes of levothyroxine are NOT listed there.
Identifying the available products and their exceptions is precisely why I created my UK medicines document. I'm not aware of any other complete and readily accessible source. (The information is available but takes a lot of work to ensure you get the full set.)
There are two readily available lactose-free levothyroxine products in the UK. Aristo Vencamil and Teva.
helvella's medicines documents (UK) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines licensed in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
Up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and liothyronine available in the UK. These include declared ingredients for all UK-licensed products.
Details of every dosage of each medicine include PL numbers, PIP numbers, tablet markings, product history and links to:
● Patient Information Leaflets
● Summary of Product Characteristics
● Product Assessment Reports
● Dictionary of Medicines and Devices (dm+d) entry and current prices
Document has links to:
● British National Formulary
● NHS Drug Tariff, etc.
PLUS how to write prescriptions in Appendix F.
Also includes links for anti-thyroid medicines (but not product details).
Thank you so much, Helvella, for your very helpful link.
I found Vencamil in the EMC and asked my chemist, but he had never heard of it. Teva contains acacia stereate. As I have a bad reaction to acacia powder used in some medicines, I presumed that an acacia derived product would not be suitable for me.
I live in the Greater London area. Might you be able to tell me where I might source Vencamil?
Any pharmacy should be able to get it. Their ignorance shouldn't be a barrier!
That is why I have included the PIP numbers which are widely used in pharmacy for ordering.
The product is carried by at least Alliance (distributor).
There could be an issue if your pharmacy is a branch of a pharmacy chain which forces all orders to be via their own ordering system and distribution organisation. Even then, I think they are supposed to deliver whatever has been prescribed.
They have a good attitude towards communication. You could contact them yourself. Or pass the contact details on to your pharmacy.
Longer term, the important issue is to get your prescription written for Vencamil. Without that, even if they get one lot, there is no guarantee they will get it next time. See Appendix F of my document. E.g.
Wow, that was a quick response. I would like to commend you on your excellent work compiling all available lactose free medicines. At every turn you fight ignorance, either by doctors or chemists.
I have gone to a chemist who seems not be chained to a particular wholesaler, my local one was just shaking his head. I’d better give him the PIP number of Vencamil and see where I get to with that.
Thank you. My own pharmacy has been helpful and I received Vencamil even without it being written but they end up losing out. (Not by a huge amount - but enough to be a problem.)
That pharmacy appears to be independent, and is in many ways, but it was one that had been sold off by the Lloyds group - who force them to order through their own distributor due to the contract under which it was sold.
I have written to Aristo Pharmacy to see if they can help.
Where do I go from here? All the pharmacies around me seem to be tied to certain wholesalers. The chemist suggested I ask for liquid Levothyroxine to be made up, as I am intolerant to all artificial sweeteners? Is that a solution?
It could be. But at something like £100 a bottle starting price for liquid products, getting anyone to prescribe it is extremely hard! (And few get a strength which allows a bottle to last 28 days - like tablets. More likely a bottle and a half or so each month.)
And all too many who have tried the products find that the significant glycerol content is more than they can cope with. Or the Sodium methyl parahydroxybenzoate (E219) they all contain.
If they are making it up, the cost could be even higher. Which might be why they are suggesting it? Profits on specials can look attractive.
Thank you so much, your mention of glycerol and Sodium methyl parahydroxybenzoate is very helpful. No doubt I would have problems with that.
It is outrageous that one has to fight so hard to get what should be ones birthright. Proper medication for a condition that is not uncommon and not self induced, unlike diabetes in many cases.
Typical knee jerk reaction of an uninformed GP! First of all, only testing TSH is totally inadequate, as this is just a signal from your pituitary in response to your medication. How does the GP even know if this feedback is working correctly (and you have thyroid disease after all, don't you?), if he does not measure T4 or T3, which are the actual thyroid hormones. But he sees the low TSH and immediately thinks over replacement and reduces your medication.
In addition, 25mcg can be a very large reduction when you have been on a higher dose for a while. So as other have suggested, I would reduce by 25mcg only every other day, so the jump is not that high. However, I still think this is tapping in the dark as how do you know if you really need a reduction if you do not know what your actual T4 and T3 levels were?
Were you symptomatic before your reduction? Of course, we do not want to take medication if it is not warranted, but without having the actual numbers, this is not a good course of action and could actually leave you with too little thyroid hormones over time.
I would alternate the dose only for now and after 6-8 weeks do a private test checking TSH, T4 and T3. Then you will have a clearer picture of where your actual thyroid hormone levels are. You might be surprised!
There is a publication that actually highlights that dosing by TSH is not advised, as in some patients the TSH-T4 axis is broken, which means when they take levothyroxine, the TSH gets suppressed even though the T4 is still in range or even low in range, therefore dosing by TSH can leave these patients with too little hormones.
Actually HazelRoxie you might want to consider asking your GP for a retest because you believe the last one will have been a false high result being as it was so close to you taking your full thyroxine dose and whilst you have complied and reduced your dose thst has resulted in you now feel terribly unwell. Meanwhile please would they reinstate your 125mcg script as you’re about to run out.
That would be a good idea, if the GP would believe that the test was altered due to taking levothyroxine. However many GPs think that this would make no difference at all and I doubt that her GP would agree to alter his decision on that basis.
I've had an updated blood test through monitor my health (although I need to redo the anemia test due to issues with the sample)
I should preface this with the fact I've only been on the reduced (100mcg) levothyroxine dose for 3 weeks.
My previous test result was a TSH of 0.06 through my GP so I'm not sure on the range sorry this was taken on the 4th of February.
My latest results are:
TSH: 6.01 [0.27 - 4.2mU/L]
FT4: 11.5 [12 - 22pmol/L]
FT3: 3.7 [3.1 - 6.8 pmol/L]
TPO: 79 IU/mL raised antibodies being 35 or above.
Vitamin D: 49nmol/L range on graph but classed as mis range adequate [35 - 60 as a best guess from the image]
I'm due for a GP blood test in April, but likely only TSH. My prescription is for the 100mcg now so without a change to my prescription I can't increase my dose.
Do you think this Vitamin D requires supplementation, I have just come back from holiday where I got more sun that usual.
Gosh look at that! Your FT4 is below range and your FT3 is right at the bottom of the range. Little wonder your body and brain is freaking out.
Can you go back to the GP with this test result and talk to him about it. Tell him you felt it necessary to retest and fully, because you feel so unwell and can't function.
When he (inevitably) tells you he doesn't take private blood tests, tell him Monitor My Health is a blood test run by the NHS lab at Exeter hospital (think it's Exeter) so it's an NHS test, just that you paid to have it done to get the full picture and you would like the details entering into your patient record.
Then firmly insist you must have your dose reinstated and retested 8 weeks later. He has made you ill. Take your partner with you if you can. Gang up. They seem to feel they can pick on us thyroid patients.
Mmm , so ok we know 3 weeks is too soon for tests to be a reliable indication of what new levels will be once dose has had enough time to settle in, so your TSH /ft4+ ft3 may well be different in a few wks time ....but i note you said you were trying to conceive...
if that is an imminent possibility then TSH of 6 and below range FT4 level is a concern. (fetus relies on fT4 from mother for first 11ish weeks , until it grows it's own thyroid )
so in the light of 'trying to conceive ', i would suggest you make GP aware of these MMH results , and don't get pregnant until they are improved. TSH should be under 2 ish and stable before TTC.
if not imminently getting pregnant , then retest after about 6-8 weeks on this dose , see what results are then ..... but the initial results certainly seem as though 100mcg is not going to be enough for you.
I mainly did the test for the vitamins and anemia but also the TPO as I haven't had it down before. I'm taking the TSH, FT4 and FT3 with a pinch of salt but I was shocked at the swing in TSH compared with three weeks ago.
We've been trying for 8 months now, I'm not sure how much the thyroid has been impacting my results. It being high maybe made sense but now I'm not so sure wether it was high at all. I wish I knew then what I knew now and pushed for another test before accepting a reduced dose.
I'm going to call and get an appointment ASAP. One for the TTC but also I'm feeling so ill that I'm having to consider time off work, that can't be right 3 weeks into a dose change.
i've struggled with dose reductions ... in my experience even when the first 4/5 weeks feel definitely undermedicated , things can then slowly improve from wk6 onwards ,and by about 2/3 mths the lower dose has actually felt better overall than the previous dose did ... yet if asked at week 5 i would have been absolutely adamant that dose needed putting back up .
not always though,,, on one occasion the undermedicated symptoms kept getting worse after wk 5/6 m and i had to insist i needed dose to be put back up a bit .
i've never tested @3 wks ,so no way of knowing if a such a big rise in TSH is to be expected or not , or what it will be in a few wks time when settled but i would expect it to swing around a bit in the first few wks after a dose reduction.
however in your situation ,the below range ft4 is a red flag... after 3 weeks fT4 levels should be a relatively good indication of the fT4 levels the new dose is giving you . so what with that , and the TTC , i think GP should seriously consider putting your dose back up now to 112.5mcg
i think ? there are some new/ recent NHS guidelines for thyroid treatment in pregnancy / TTC , but not sure where they are off hand , (the usual n.i.c.e guideline's for hypothyroidism don't cover pregnancy TTC, so the recommendation to get TSH below2 isn't in there .... if i can find them i'll add a link later.
a reduction of 25mcg is often proves too heavy handed in practice , a 12.5mcg adjustment , or less , is often all that is needed, but GP's do 25mcg for convenience because 25mcg is the smallest size of tablets ( well actually a couple of manufacturers, TEVA and someone else , do make 12.5mcg , but they cost a fortune ,so not often prescribed )
112.5mcg is more usually prescribed as 125/ 100 alternate days .
eg GP should be looking at these comments in NHS Clinical Knowledge Summary : cks.nice.org.uk/topics/hypo... hypothyroidism/management/preconception-or-pregnant/
open the drop down box marked ' Basis for Recommendation' to see all the details.
also these are worth a look , only drafts , i'm not sure if in use yet , but contain lots of useful info : rcog.org.uk/media/lxkmvfti/... (Royal College of Obstetricians and Gynaecologists ~ Thyroid Problems in Pregnancy )
Yes, I understand exactly what you are feeling. Dose reduction is extremely hard. It really knocks me for 6 for several weeks and even then, when it settles down a bit, I'm just left more hypo and more tired than before I started. I am in this exact same position myself right now. Only mine is self induced. I had pushed my dose too high for me to tolerate (blood levels still low) and now perhaps I have over compensated going backwards. Trying to hold still on a dose long enough to test can feel like torture.
I've never had an reduction before so I wasn't quite sure what to expect to be honest. It's been so difficult though, and the mental impacts have been the worst
Yes, it's always the mental issues. Massive anxiety (the brain is a huge user of thyroid hormone) and dysregultion of just about every other hormone in the body too. I can't concentrate right now.
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My own pharmacy has been helpful and I received Vencamil even without it being written but they end up losing out. (Not by a huge amount - but enough to be a problem.) 
Managing TSH with T3 only 
Are these symptons real or just in my head?
TSH suddenly spike despite staggered reduction in thyroxine
Reduction of medication 
