Unable to tolerate sufficient Thyroxine to get well.
Have been trying for 4 years
Symptoms: Joint pain, Fatigue, Itching/tingling, Hot face/blotchy, Heart burn, Painfull underfoot, unable to tolerate one leg on the other when sleeping
On Thyroxine 75mg, tried one day a week increase to 100mg very unwell and increase in symptoms after 6 weeks
TSH – 5.4 (0.27 – 4.5)
FT4 - 11 (9 – 23)
FT3 - 4.2 (3.5 -6.5)
Ferritin 181 (22-322)
Calcium OK
B12 - 350 (211-911)
Vitamin D – 76.3 (20-100)
Blood pressure 135/81
Have tried T3 and NDT with assistance of understanding Endocrinologist and GP (rare beasts) – In all cases, only able to tolerate small amounts before being really unwell
Other medication
Statins (tried 2 months without, no difference in symptoms), have to take due to genetics
Testosterone injections
Written by
stephensmith
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You are in the USA. Most members here are in the UK. Europe bans hormones being injected into animals for food.
Yet the story of thyroid issues is pretty similar both sides of the Atlantic. That doesn't exonerate hormone injection, but does rather suggest that most cases in Europe are for other reasons.
Mmm Folate B9 ??. Never tested for this, appears to be related to anemia? I actually look as if I have a lovely sun tan (due to the hot face). Never tested for antibodies as assumed this would only diagnose if Hashimotos ??
My thought has always been that the treatment is the same, although if you had Hashimotos your thyroid output would gradually decrease. I have assumed that my inability to tolerate additional medication would not be related to if I had Hashimotos or not??
Well, even though your B12 is in range, 500 and above or near the top of the range is considered optimal. People with Hashimotos may have absorption problems which is why it's good to know whether you have antibodies. Gluten free is often needed to improve gut function. As B12 is low, I would check folate too.
For B12 and folate advice check out Healthunlocked pernicious anaemia forum for best advice.
Personally, I would want to rule out antibodies as it may have a bearing on symptoms and if you have one autoimmune condition you may be more vulnerable to another but if you don't feel it necessary then I expect your doctor will be happy to save money on tests.
If you feel better without thyroid meds then a TSH of 5.4 may be ok for you as everyone is individual and it may depend on a lot of other factors such as age, your genetics etc. Symptoms and how you feel are important factors too.
My plan of attack at the moment is to get as many Vitamin checks as possible out of my GP, but you are probably right about the antibodies. I am aware of gluten free as my wife is a Coeliac. I have tried to go without Thyroxine and only lasted one week, the joint pain was intense, to say the least. Most of my symptoms seem related to low (within range) B12, probably not low enough to get injections but might get strong B12 tablets on prescription. I am hoping that if I get level up then I can take more Thyroxine and feel better
Unlikely to get B12 tablets on prescription if in the UK as you are in range. Best approach as SlowDragon says is to supplement methylcobalamin sublingual tablets or oral spray 1000mcg per day and check levels in 4/5 months time. Also take a good B complex to keep the B's balanced. It will likely have some B12 in it so judge the amount extra you need in a separate sublingual form. Try to get a B complex with the methylated forms as they are the most absorbable. If in the UK, Thorn Basic B is a good option.
Supplementing magnesium is also a good idea. Magnesium citrate is ok but there are other choices for magnesium too.
Take vitamin C to support adrenal function. You need a goodly dose, not sure how much so you could post another question. I take 1000mcg per day but you may need higher doses in the short term.
You seem in a similar position to me. I do however have Hashimotos but unable to increase meds (Levo / NDT / T3) to feel well. I've tried everything, had extensive bloods with TSH 5.2.
I'm on 250mcg Test injections every 18 days (libido etc is spot on so this is not the issue)
Can I ask what D3 supplements you take? One routine back in the summer that made me feel good was 50mcg levo eod & 75mcg levo eod, 3000iu better you d3 spray. Holland and barrett mag oil spray 15 sprays a day. Nothing else was used.....I felt great.
Nowadays, I seem to be going downhill. I have changed my d3 to lanolin so plan to return to the above protocol.
I experienced your symptoms but I overcame it for more than a year now. My dosage went up to 120mcg and the symptoms went away. I eat a lot more French lentil and quinoa, homemade chili. I play badminton at least 2 times a week, play pickleball twice a week, walk my pooch daily, swimming at least once a week. Now my dosage is 75mcg but my lab test has swung to the extreme left and right of the spectrum yet I am feeling great. What gives? I have not got a doctor to tell me what is wrong with my lab test. My doctor does not even answer my email. She has no clue with my hypothyroidism. ugh.......
Two things to think about, Statins can cause muscle problems, my husband had to stop them because of this. I have Hashi and even on levo had muscle aches until I went gluten free.
The most obvious starting point is that these vitamin levels are okay but not optimal. It's worth trying to get them up just because that's a test book, obvious thing thf at applies to everyone. B12 should be 500+, and Vit D 100+. For the others I don't know enough to say, but generally you want at least halfway through the range.
It's interesting that the other person in the thread seems to have the same problem and also inject testosterone. All these hormones are linked, but you will be hard pushed to find any doctor or person that has good knowledge about these relationships
Although this problem comes up on the forum occasionally, and I'd always thought adrenal problems were the general explanation. This would be adrenal fatigue, not the more extreme form that you may get tested for in the NHS.
Due for another round of blood tests early Jan. Will see how many of the vitamin tests I can get, then take supplements to get to upper range. My main issue at the moment is the itching, this is like pins and needles and is clearly given as a symptom of b12 deficiency
Oh yes, apologies, I hadn't realised it was these more fiddly, allergy type things. I think the typical adrenal-type symptoms would be a feeling of being overmedicated while actually undermedicated.
Two very knowledgeable members have suggested liquid thyroxine. This can be prescribed but I think is hard to get. You'll need to get a doctor onside and interested in your problems.
Have a good gp and endocrinologist , so gp will be ok for a trial if I suggest. I always spend time preparing and knowing what I want. Pay private for endocrinologist but only see once a year or when needed. Name obtained from Admin on Thyroid UK
Cherry stones have arsenic in them as do apricot stones.It is bad enough trying to stone them all it takes for ever. I live in France and we don't seem to have to many blackbirds in our garden. Good idea for a heat bag good for you.
Had an adrenal stress profile which showed 2 out of the 4 samples only just outside the tolerances
This isn't enough info to tell us whether your levels are okay. Does "outside the tolerances" mean above the range or below the range? There is a difference in how low and high levels of cortisol can be treated. Perhaps you could post the results.
And how did your results compare to the optimal results? See this page :
I could never tolerate as much thyroid hormone as I needed to make me feel even slightly normal until I managed to reduce my high levels of cortisol. Some people have the opposite problem, and need to boost their levels of cortisol before they can tolerate an adequate dose of thyroid meds.
Have you tried half of the recommended dose the Endo suggests and adding a week or two at that dose. It might be your body struggling to take that jump in dose. Also Mercury Pharma do a liquid form if it’s the fillers you don’t get with in tablet form. I’ve seen it administered in hospitals only. But had a good look and it’s available hopefully from your Endo if not maybe get a referral. I took a photo of it about three months ago, so inbox me if you get any excuse from Gp or Endo and I’ll email you photo. Definitely Mercury Pharma which is a U.K. brand I believe. Good luck.
I was on 75 every day for 6 months, felt I was on the limit. Increased just ONE day of the week to 100 and went hyper after 4 weeks.Think I will try vitamins route after tests in early Jan, liquid thyroxine if necessary. Thx
Not sure if all birds. I used to rescue parrots and was told to take out the seeds and stones from the fruit I gave them first. And the food goes through a lot of processes ie the crop, before it gets to the gut.
Slightly different, but you shouldn't feed parrots avocados, as every part is poisonous and fatal to them. Never have found out what it is in avocados that does this!
I am on Armour, take it empty stomach in the morning, before that I was on NDT did not suit me. Sometimes splitting dose am and 2 hours after dinner works. Blood work after 6 weeks of dose change. Good luck!
I was also unable to tolerate thyroxine for for about 11 years. The primary symptom was disabling anxiety, I would feel like I wanted to jump out of my skin. I had had gluten enteropathy that set off Hashi's. In addition to getting off gluten, I needed long-term therapy with nutritional supplements before the bad symptoms subsided. I am now on T3+T4=12+100 mcg, feeling great.
I just posted what my numbers look like, now that I am on optimal treatment. For about 11 years, I was on T3-only for over a year, and then stayed on sub-optimal treatment (FT4 below range, FT3 low in range) for an extended period. During those ~10 years, I experimented with lots of different supplements. I finally hit on the right combo of supplements (esp. free amino acids, because the damage to my gut from gluten was preventing me from efficient digestion of protein foods; having enough aminos helped my adrenals function correctly, supporting sleep). I was able to increase my T3+T4 dose from 10+75 to 12+112 over a period of 5 months; I'm now feeling very well, with numbers to match.
No not been tested. My gut function is fine. My wife is a Coeliac and whilst symptoms can be different ( even ) silent I do not believe I am auto immune. My thyroid issues were brought on by stress at work but I have been retired for 4 years
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