Hello! My dose of Levothyroxine is 112mcg right now. I have been on this dose for 4 months. My Endocrinologist tried to raise me to 125mcg and after a week I felt so much worse. These symptoms that usually come and go got way worse: Eye pain, extreme muscle pain to the point my legs lock up when walking, unusual nervousness and anxiety for no reason all day and night, can't relax, zoned out and forgetful, breathlessness, and poor sleep, and just an all around uncomfortable feeling. I went back on the 112mcg but still feel unwell and still have the same symptoms that come and go. My last Endo visit she said to introduce 1 day a week of 125mcg for a few weeks and then add another day and stick with that for 12 weeks. I took 125mcg every Friday for two weeks and 112mcg the rest of the week. Just got done adding another 125mcg on Tuesday and I am off the hook with symptoms. I feel horrible with all the same symptoms just revved up a million times over. I am beginning to wonder if I have an adrenal problem or something but can't get Endo or Dr. to test for hormones or adrenals. I also thought I might be in Menopause but my Endo says my blood tests say I am not. She said the high DHEA is indicative of PCOS (Polycystic Ovary Syndrome.) I would think that high DHEA and testosterone would cause a lot of the symptoms I have? But what do I know. I just found information about a Medical group here that specializes in Hormone testing and was going to try to get my dr. to refer me to them so the insurance will cover it so that I can get all of the testing I need to check for adrenal problems or hormone inbalance. I would appreciate any input, thoughts, or experiences you have about my situation. I have been miserable for a few years now with these symptoms and I am finally getting my thyroid within range but whenever we raise the dose I can barely function. Thanks in advance. Tired of being miserable and barely functioning.
Endo tested what she could:
Free T4 0.9 (0.6-1.2)
TSH 12.60High but way better was 99.82 (0.45-5.33)
Total T3 70 (80-200)
Theroperoxidase Antibody 113.60 High is my result ( <9.00 is the range)
DHEA-Sulfate Panel 295High (19-231)
Luteinizing Hormone 4.8 is my result (<103.1 is the range)
Estradiol 48 is my result (<434 is the range)
Follicle Stimulating Hormone 10.8 is my result (<113.7 is the range)
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sorry you feel so awful but atleast you should know that your not alone feeling like that, my tsh just like yours is around 12, I’m currently taking 125 mcgs of synthroid for six weeks now.. and feel super under medicated! When I was taking 112 mcg my tsh was in the 5ish after the raised it shot Up to 12 and hasn’t improved! I see my Endo next Wednesday and he will raise my dose since she wants my tsh as suppressed as possible because I have hashis like you! Now to talk about all the symptoms I have them! Anxiety, depression, brain fog, no motivation, I want to go to bed at 8 pm... and the list goes on. So yeah idk why I got worse instead of getting better I thought it was a transient thing as I always feel worst for like 3 weeks when I up my dose and then start feeling better but this time hasn’t happend 6 weeks in feeling horrible!
Your TSH is too high and your dose of levo should have been increased:-
"TSH 12.60High but way better was 99.82 (0.45-5.33)"
The aim is a TSH of 1 or lower with a Free T4 and Free T3 in the upper part of the ranges. The latter two are rarely tested.
Due to having high antibodies, you have an Autoimmune Thyroid Disease - commonly called Hashimoto's. Going gluten-free can help reduce antibodies as these attack your thyroid gland and wax and wane until you're hypothyroid.
Always get the earliest appointment for blood draw (TSH drops throughout the day and that is all the doctors seem to look to increase/decrease dose). TSH means 'thyroid stimulating hormone' and is from the pituitary gland which tries to flag the thyroid gland to produce more hormones. The aim is a TSH of 1 or lower with FT4 and FT3 (latter two rarely tested) in the upper part of the ranges.
Allow a gap of 24 hours between last dose of levo and blood test. Blood test should be the earliest possible, fasting (you can drink water) and take levo afterwards.
Ask GP to test B12, Vit D, iron, ferritin and folate and all should be optimum.
Thyroid hormones should be taken with one full glass of water, on an empty stomach, and wait an hour before eating. Food can interfere with the uptake of the hormones.
I take T3 after a blood test which would be around 24 hours between dose and test. I don't think test results can tell us 'how we feel' on a particular dose. It is how our symptoms are relieved which is the best judge (I think) of an optimum dose. i.e. we feel well with no symptoms.
Some leave 12 hours apart when taking T3 and test but that would mean I'd have to take dose much earlier and I'm not messing around with timings.
Before blood tests were invented - along with levothyroxine - we were given NDT (natural dessicated thyroid hormones) and this was slowly increased until we were symptom-free. Clinical symptoms were the priority back then which seems much simpler than trying to 'fit' results into a range. NDT contains T4, T3, T2, T1 and calcitonin (natural dessicated thyroid hormones are made from animals' thyroid glands i.e. pigs or cows.)
I am not medically qualified missydoo82 but I certainly would have a faster heartbeat should my T3 dose be too low (I take T3 alone). T3 calms my heartbeat to normal. If under-dosed my heart beats faster and it makes meI feel uncomfortable.
I really feel for you. Is it worth paying for the full set of vitamins and thyroid? Medichecks or Thriva?
To see if there’s anything else going on? could you have gradually upped the levo but stuck with it? People on hear tell me it takes 4-6 weeks to get benefit of levo increase.
After 14 months trying to work stuff out for myself I realise that although the meds options are very limited the variations of timings etc are huge - so we really have to work out what works for us individually.
I have similar adverse effects from levothyroxine and every attempt at increasing the dose caused problems. It took years to get to 100mcg/day and only then by using t3 and antihistamine to cope. The antihistamine seemed to ameliorate the immediate adverse effects of levothyroxine and could be stopped after a month or so when the levothyroxine dose had established as a normal thing! Apart from non thyroidal levothyroxine reactions too much free t4 all in one hit such as from the standard waking dose recommended for levothyroxine affects the intracellular conversión rate. This conversion of t4 - t3 is known to be reduced with increasing free t4 levels. So, it is more than possible that so called therapeutic doses of levothyroxine can actually cause a kind of perverse tissue hypothyroid state. I have found that splitting my levothyroxine into 3 or even 4 doses helps avoid the adverse effects. On top of that some t3 replacement maybe as little as 5-7 mcg helps to find tune our thyroid status through the day.... as others have said TSH between 1-2 is more indicative of a happy thyroid state, so long as ft3 and ft4 are sort of mid range or slightly higher. Perfect thyroid status is probably impossible from exogenous hormone replacement compared to fully functional thyroid gland capabilities.
What was the antihistamine doing for your symptoms? How did it help? I am on T4/T3 therapy but can not tolerate large doses of T4 without extreme anxiety and mood changes. The T3 seems to be my happy pill but I may need an increase in T4 as well so trying to figure out what the antihistamine did for you. Thanks for your help in advance.
Hi, I noticed that some of the adverse affects I was experiencing from thyroxine were like hayfever, which I’ve never had before and which persisted throughout the year regardless of whether there may be hayfever in the air! I take a half a standard cetirizine dose before bed and all the thyroxine dose during the night split into two or three portions! The antihistamine reduced some of the side-effects and also helps me sleep, which the thyroxine also seem to disturb. As I said, once I get used to a particular dose of thyroxine I gradually cut back the antihistamine to little or none depending how the thyroxine is affecting me ( symptoms include. headaches itching eyes stuffy nose - like hay fever!)
Got it - and thanks so much for answering. I have allergies myself, but they are well controlled and do not get worse with the addition of Synthroid. Funny enough, I had terrible hives when I started on Synthroid after my TT - but these disappeared after a while. The things we all go through to get better is unbelievable. Sending all good wishes your way today.
Interesting, I gave the impression that the thyroxine was perhaps triggering allergies… I don’t think that was what was happening! I don’t have those allergies and so when I was investigating side-effects of oral thyroxine in relation to histamine I discovered some research going back 50 years but which has not been followed up - in a trial laboratory mice were given histamine, which is a naturally occurring poison formed in our gut that we ordinarily neutralise, and when the mice with large histamine doses were also given thyroxine they all died (of histamine poisoning) but without the simultaneous dosing with thyroxine they all survived! The researchers postulated that thyroxine in the gut that was affecting the normal neutralisation of histamine by diamineoxidase!
That is so interesting! I wrote a post about hives and thyroid - I cited a clinical study about this. If you click on my name you can see the post and open the article. You might find it interesting. All the best.
Hi, sorry you’re having such a bad time, I hope you can get things straightened out soon. It is really lousy when you need a higher dosage but your body can’t tolerate it, I’m in that same category too, I had problems on T3 too, heart palpitations and racing and on NDT also, so I’m back on my old dosage of T4 but I have added a very small amount of T3 to it, just 1/4 of a 5mcg tablet, so far, so good, so I’m thinking about trying 1/2 a tab if I can get enough nerve up, and see what happens, I think that I tried to increase too high and too soon before, plus my Dr. had me on too low a strength of T4 at the time. You might have to try some different combinations of T4, plus T3, possibly lower the T4 some and just try a very small amount of T3 with it. I’m new at trying to combine the 2 but I haven’t been great on just T4. Good luck to you!
Have you tried natural thyroid hormone? and in decided doses . I take mine 32mg 3 times a day, and eat oranges 3 times a day to keep blood sugar even , that seems to help.
Have you had vitamin D, folate, ferritin and B12 tested?
Frequently these are too low nd need supplementing to improve to optimal levels
Vitamin D at least around 80nmol
B12 at least over 500
Folate at least over 10
Ferritin at least half way in range
Your high thyroid antibodies confirms that cause of your hypothyroidism is due to autoimmune thyroid disease
Are you on strictly gluten free diet?
If not, it's likely to help
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.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 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
I usually feel OK when waking in regards to side effects. I take 125mcg of levo shortly after at about 6_7ish am and generally feel OK for several hours then feel like a weight is pulling me down and my mood becomes irritable and uncomfortable. I then take an antipsychotic drug to help with these feelings and it works fairly quickly but after a month on antipsychotic drug, aripiprazole, extreme breathlessness and fatigue, very heavy laboured breathing and depression. So do I now take antidepressants or deal with the side effects of having Thyroid disease.
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