I started with underactive thyroid in 2013 and basically was very ill with a whole host of issues. I was under a rheumatologist who diagnosed Lupus and then said I did not have it. It was only after having a year off medication all my symptoms resolved and because of rising TSH I had to re take the levothyroxine. All my issues returned. I have resisted lots of other medication for other ailments and only take Levothyroxine as I wanted to see if it was the Levothyroxine its self that is causing the issues. Recently immunology said it was not possible to have a true allergy to it but I could be intolerant to it. He said he would ask my GP to run a series of bloods to check where I am at currently and suggest they source a desiccated brand. In the meantime I am currently taking 25mg of liquid to keep me ticking over and am suffering with hypo symptoms. I am hoping I hear from GP soon but I wondered what your thoughts were on allergies/intolerance. Is this recognised? Most of the specialists I have seen over the years say you can not have a issue with Levothyroxine as its just a hormone. I still believe I had drug induced Lupus and for whatever reason my body decided to fight back. I absolutley can not take this drug for whatever reason and would love to hear similar stories and views. Thanks
Allergic or intolerant: I started with... - Thyroid UK
Allergic or intolerant
Standard starter dose of levothyroxine is 50mcg unless over 65 years old
Levothyroxine doesn’t “top up “ failing thyroid…it replaces it . Hence almost everyone will eventually be on full replacement dose
Dose levothyroxine should be increased slowly upwards in 25mcg steps until TSH is ALWAYS Under 2, usually TSH will be around or under one, Ft4 in top third of range and Ft3 at least 50-60% through range
Essential to regularly retest vitamin D, folate, ferritin and B12
If left on just 25mcg levothyroxine, likely low vitamin levels, high cholesterol etc
When were vitamin levels last tested
Have you had thyroid antibodies tested
About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies (can be misdiagnosed as lupus)
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Also here
cks.nice.org.uk/topics/hypo...
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Hi thanks for reply, I aware of all these things but the issue is as stated I simply can not tolerate more than 25 even the 25 is making me ill. I have tried numerous times to increase and become very unwell. I am only taking the liquid because I have had nowhere to go for help and without any treatment at all I would feel worse. I have been waiting ages for hospital immunology appointment. I am still waiting now for tests and request for desiccated and he was aware my private bloods with Medichecks showed a month ago I was under treated. Not any ones fault just the covid legacy. I am currently supplementing B12 and vit D and every test I have had previously showed no antibodies. I can not increase this at all I simply can not tolerate it I would love to find out why. Thanks
What symptoms do you get if you increase the dose?
I had to take propranolol and levothyroxine for 20 years as couldn’t tolerate higher than 75mcg ….more on my profile
If been hypothyroid a long time adrenals get exhausted because when under medicated adrenals try to compensate for lack of thyroid hormones. Initially this causes high cortisol, but eventually they can’t keep up and levels cortisol drop
Have you had short synathin test or 24 hours urine collection
Or done Regenerus Cortisol and DHEA test
regeneruslabs.com/products/...
cdn.shopify.com/s/files/1/0...
What are your most recent thyroid and vitamin results
Are you on strictly gluten free diet
Have you had thyroid ultrasound scan
Hiya, Yes I have been hypo for a long time . The urine test and the short synathin test are two that he is planning. I am not sure about the Regenenerus cortisol and DHEA test I have not heard of those. Last ultrasound a few years ago and all normal apart from noticing thyroid small. Last bloods TSH 3.92 range 0.27 to 4.2, free t3 4.46 range 3.1 to 6.8, free thyroxine11.7 range 12 to 22 bloods done on 9th september. I have had to go gluten free as my guts can not tolerate it, however celiac test negative and not lacto intolerant. Vitamin levels must be better as I am supplementing currently. My more worrying symptoms when I increase are perfuse sweating (literally all day) this has reduced significantly on 25mg but not completely stopped. Palpitations and shortness of breath. The shortness of breath triggers panic attacks something I do not normally suffer from. Feel faint like I am going to drop, never ending migranes which again have reduced as I have reduced meds. I also get what I diagnosed as liver pain/ kidney pain but maybe a bit high for kidney Upper back right side. Perfuse watering eyes, dry eye sensation that is overwhelming to name a few but I generally feel dreadfully ill like am dying. I honestly feel so ill at higher levels.
It’s 25mcg (not 25mg)
Suggest you try adding 12.5mcg at bedtime
Gluten free diet means thyroid antibodies likely to be low
Small thyroid suggests autoimmune Ord’s thyroiditis
Yes I use to get sharp hot needle pain in adrenals/kidneys (and still do occasionally)
maplewood,
Many Lupus symptoms overlap those of hypothyroidism, ie tiredness, pain & swelling, mental health issues, a dysfunctional immune system, etc .
Did you have elevated ANA’a? It is unlikely Levothyroxine would cause elevated ANA’s. Your symptoms are more likely due to trying to raise thyroid hormones with adrenal issues & possible other co-factor deficiencies, or an intolerance to a filler in the Levothyroxine.
Have you had thyroid antibodies TPOAb & TGAb tested? Are your iron levels adeqaute?
Thanks for reply. Yes I had raised ANA at the time. The immunologist is going to check adrenal function but a few years ago they did tests and they were ok, I am not sure which tests though. ? to iron because I have always had issues and always got turned away from giving blood although my last bloods were ok. My antibodies were tested a couple of times but I didn't have any. As far as I know I have issues with the pituitary gland.
Were both TPO and TG antibodies tested
What were most recent B12, folate, ferritin and vitamin D
Sweating is frequently low B12
It takes 6-8 weeks to get use to each dose increase in levothyroxine
You might need to block adrenals with propranolol in order to tolerate dose increase
? on antibodies. I am supplementing B12 and vit D though and still feel ill when i try to increase to 35. Folate and ferritin ok ish on last bloods ? what they are at the moment. I heard the GP,s can not do blood tests at the moment
Test privately to make progress
What were most recent vitamin D, folate, ferritin and B12 results
NHS refuses to test TG antibodies unless TPO antibodies are high.
As your already on gluten free diet, this frequently lowers TPO antibodies so not surprising TPO antibodies are negative
Have to dig out test results on B12 etc. Would it be worth testing TG privately if TPO negative. Not sure how it works but would it be worth me doing?
Suggest you test whole lot before seeing any thyroid specialist endocrinologist ….thyroid including thyroid antibodies and all four vitamins
What’s your diet like, apart from gluten free
Are you vegetarian or vegan
Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Low vitamin levels common as we get older too
20% of Hashimoto's patients never have raised antibodies
healthunlocked.com/thyroidu...
Paul Robson on atrophied thyroid - especially if no TPO antibodies
paulrobinsonthyroid.com/cou...
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 and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test or pay extra for private blood draw
bluehorizonbloodtests.co.uk...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Central hypothyroidism is where TSH does not respond correctly to low Ft4 or low Ft3
bestpractice.bmj.com/topics...
ncbi.nlm.nih.gov/pmc/articl...
endocrinologyadvisor.com/ho...
maplewood,
Oh, ok. In the sense of central hypothyroidism, too littleTSH ?
Sorry what do you mean?
I know I am not taking enough levothyroxine but i cant seem to get any higher
maplewood,
You said you had a pituitary problem. TSH is a pituitary hormone. Have you had a diagnosis?
Lupus will be complicating thyroid issues further but I would still guess it's cofactor deficiencies causing your intolerance of Levothyroxine. Thyroid hormone replacement meds can be very intolerant of low cortisol, iron, other nutrients and even blood sugar issues, all of which are caused by the low thyroid hormone levels so becomes a vicious circle.
SlowDragon above has already given advice on which tests will be useful to assess what is going on.
I don't know if it's allergy or intolerence but I cannot take T4 either. Sometimes people are allergic to the fillers in the tablet, but I tried different brands and it didn't help. And nutrients were good, so it wasn't that. And, I didn't have a conversion problem. And NDT was even worse for me, so I'm on T3 only, now. But, I would agree it's highly unlikely you would be allergic to a hormone. I'm just better of without T4, and that's all there is to it, and there are others like me on this forum, too. It's not that unusual.
There was a discussion on here a while ago about why people may not tolerate T4, but we found no scientific explanation for it. The only conclusion we could come to was that the longer you had had undiagnosed/untreated hypothyroidism, the more likely you were to have an intolerance of T4. I believe - and was backed up by a hormone specialist I saw - that I have been hypo since I was 8 years old. I was diagnosed at 55.
As to gluten-free diets reducing antibodies, I would say that it's impossible to prove. Antibodies fluctuate all the time. And reduce in number as the thyroid diminishes in size due to the immune system attacks. I would say that not enough proper research has gone into that theory to know for sure.
On the other hand, 20% of Hashi's sufferers never even have over-range antibodies, and are diagnosed by unltrasound. Have you had an ultrasound on your thyroid? Also, the NHS only tests TPO antibodies, but if your TPOab are low, you could have high Tg antibodies, which would also show Hashi's. Have you had your TgAB tested?
Hiya, thank you for responding. I am so pleased to hear I am not the only one not able to tolerate T4 as I have been told its all in my head. I am sorry however other people are suffering just the same as me as I understand what a lonely place it can be. I am not sure about TgAB but I am guessing if it is something the NHS do not do then no. The cutting out of gluten has helped enormously and I sometimes think that was the start of it as I started to eat toast every morning before the thyroid gave in. Did you have the same symptoms as me on the T4 or did you just feel dreadfully ill on it?
In the beginning, I felt dreadfully ill, starting out on T4 only, even though I was converting well enough. And, yet, things got better when I was able to add in some T3. I've written out the whole story on my profile. 
But, no, it's certainly not just you. It's just that doctors don't like people diverging from the norm and always make out it's you that is odd and everyone else is 'normal'.
I can’t take any form or brand of Levothyroxine as it causes me to itch from head to toe. I’ve tried every brand in the U.K. and also others from elsewhere, including liquid thyroxine. I now take Thybon Henning T3.
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