On Tuesday I had an appointment with my Endocrinologist and she asked me if I had been taking my medicine properly. I have been taking it but at different times in the morning ... I have been very stressed out this year. I got burnout and have been feeling very anxious and have been having severe panic attacks. I am slowly recovering.
I want to know if very bad stress and panic attacks can prevent your thyroid medication from working well. Can stress make the whole situation worse
My endocrinologist told me to do another blood test in 3 months time and to go back to her.
I would be very grateful for any feedback.
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Hamster18
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Previous post shows TSH is far too high and you are only on 50mcg levothyroxine which is only a starter dose
Felling stressed and anxious are extremely common hypothyroid symptoms
You need 25mcg dose increase in levothyroxine and bloods retested in 6-8 weeks
Suggest you get new endocrinologist
One who understands TSH should ALWAYS Be under 2 on levothyroxine
Essential to also test vitamin D, folate, ferritin and B12,
Low vitamin levels are extremely common with hypothyroidism, especially when under medicated
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
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.
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.
I have been thinking about the last 8 months while I was taking levothyroxine. I take the liquid form and sometimes I have noticed that there was some medicine left in the vial. Could this be a reason for my high TSH?
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
Before a blood test once I had changed nothing in terms of diet and supplements but I'd had 2 stressful events in 2 weeks; I'd had an ultrasound to check for cancer and the following week my dog had to be put to sleep.
My TSH has risen to almost 4 from 2. I do think that stress played a big part in that because, as I say, nothing else had changed.
Well I am feeling much better now as I am away from work. I feel tired but I think that is also due to the hot weather. I have learnt something from this experience and that is not to take too much on and use the magical word NO!
All this started in 2010 where I had my first appointment with an Endocronologist and she diagnosed me with subclinic Hashimoto’s thyroiditis. I went back and forward having symptoms of hypo and hyper it was terrible. When I had symptoms of hyperthyroidism I was treated with a beta blocker (tapazole).
Year 2013
Then I went to another Endocronologist in 2013 and she started monitoring my blood test results and it stayed more or less in the range of TSH 3.5, FT4 0.97, Ab TSH 1.56 (without any medication).
Year 2017
In 2017 my TSH 8.5 , FT4 1.39, AbTPO 577
The Endo then told me that I had to take medication and started me off with Tirosint 50 mcg/1ml in liquid form and told me to do my blood tests in 2 months time.
In the beginning the medicine made me sweat like mad and sometimes I still have these sweats when I go in a hot room or the weather is warm. Apart from this I felt much better as before I felt like I was living in the body of a very old person. I had no energy and felt very depressed and lethargic.
Year 2018 (Taking Tirosint 50mcg/1ml)
My bloodtest results, I did two:
29/10/2018 TSH 3.46
15/09/2018. TSH 3.00
Year 2019
I continuid taking 50mcg/1ml and felt fine
My blood test results:
03/05/19. TSH 2.72
23/11/2019. TSH 3.49
Year 2020
I was not able to make an appointment before due to COVID 19
Year 2021
Blood test. TSH 5.56 FT4 1.29.
Very cholesterol 294. HDL. 107 LDL 173. Creatinina. 1.07
My Endocronologist asked me if I had been taking my medication correctly. I said a few hours apart perhaps.....
She told me to do a blood test in 3 months time and to go back to her.
I just have a strange sensation on my throat like something is pressing on it.
If any of you have any feedback on what I have written here it would be very appreciated.
I know I have repeated some of this but I need to analyse it too and make another appointment with a specialist.
74/75 kilos ( I have put on weight during the lockdown)
Just think in 2010 I weighed 63 kilos and did lots of sports. Then I started to feel like a zombie at school. Brain fog, pain in my muscles, always wanting to sleep. My job is very stressful and I didn’t have much time for myself. I think it’s time to get out of teaching . The last three years I taught special needs kids and it has taken its toll on me. It was stupid of me to take this position. My headmistress asked me to do it for the experience. Unfortunately I found myself alone having to deal with everything without any support from school or colleagues. Also Covid 19 didn’t help!
As for the endocronologist .. when she diagnosed me I did ask her if she was going to weigh me. She said there was no need to do that. I did question things from there. She is ever such a lovely woman but I do get the feeling she is a very conventional doctor
If one loses weight do you have to reduce mcg?When I asked the endocronologist if she had to weigh me before perscribing me tirosint 50mcg she told me no.
One of which is total lack of consideration of body composition. It appears that more or less pure fat is regarded as needing the same amount of thyroid hormone as muscle and brain. Which seems at the very least unlikely to me. (Some variants of the weight-based approach add in extra factors - like using Body Mass Index rather than just weight on scales.)
But dosing should be monitored by regular blood testing. Such that rising FT4 (and FT3?) due to loss of weight would be identified and dose adjusted. Once a year TSH as so many get is wholly inadequate to do this. And simply recalculating on the basis of losing a kilogram or ten (or putting that weight on, of course) is also wholly inadequate.
The difference due to weight loss (or gain) is likely less than the difference that some experience between one make and another of levothyroxine medicine. Most obviously when switching between a tablet which could have absorption as low as 50% and one of the liquid or gel formulations which could have 90% absorption. But possibly even between makes of levothyroxine tablet.
The more answers many endocrinologists give their patients, the more reluctant I would be to accept their 'guidance'.
It seems to me that instead of concentrating upon the patients' symptoms (sometimes many symptoms) into account maybe they'd give a better dose of hormonesas they seem to only take notice of numbers from blood test results..
I, for one, couldn't improve on levothyroxine although millions around the world seem to do fine. Many who're hypo - worldwide - also complain of inexplicable weight gain and this could be due to not having sufficient T3 (converted from T4) to help their recovery. Levothyroxine is T4 and should convert to T3. T4 being inactive and T3 the Active thyroid hormone needed in the millions of T3 receptor cells.
You have had a very stressful time which wont have helped you either but we learn to cope when our thyroid hormones are optimal again. ;Optimal means we have no clinical symptoms and we feel well.
I am sorry you are having problems at present i.e. "I got burnout and have been feeling very anxious and have been having severe panic attacks.'. Those symptoms, in themselves, will worry you.
Have you been prescribed a decent dose of thyroid hormones as many Endos are obsessed with not prescribing a nominal dose when they should be ensuring the patients' TSH is around 1 or lower with Free T4 and Free T3 at an optimal level. Rarely do they test the 'frees'.
I note from your response to SlowDragon that your dose is on the low side. After every appointment we should be given a rise in levo until TSH is 1 or lower. Unfortunately many Endos seem to think a very low TSH means we've become hyPERthyroid but that's not the case.
My goodness, gracious what do doctors know about treating patients who have a dysfunctional thyroid gland. Imagine sending a patient out of your surgery, without ensuring that they are on an optimum dose i.e. getting relief from miserable symptoms. The fail to know that we have millions of T3 receptor cells in our body and brain and heart contain the most.
I have experience of the 'nonsense i.e. NO SENSE because my GP phoned to tell me there was nothing wrong with me. Unfortunately he didn't understand what a TSH of 100 meant and told me there were no problems.
I just looked back about ten minutes ago at some responses I had from Dr Peatfield (RIP) wherein he stated that due to palpitations that he recommended I take either NDT or T3. He was right in that T3 resolved them.
Mind you, and you may have read this "my GP phoned to tell me that my "TSH is too low, T4 too low and T3 too high". I said "yes doctor" that's because I take T3 only, so T4 will be low and T3 appear higher. His response was 'but T3 converts to T4'. "No Doctor, its the other way around". We are up against such nonsense and how do they qualify as doctors."
I will write to my specialist. She did mention this and this is why she asked me if I had been taking my medicine correctly as I have been very stressed out lately. Sometimes I noticed in the vials that there was some liquid left in them. Anyway you mentioned I have been given a very low dosage ... a dosage which they usually start you on. I feel something isn’t quite right as my gland feels strange.
While it is of course possible that the recent stressful events themselves have caused TSH to be a bit higher either directly or because you may have missed an odd dose.. that still doesn't change the fact that you should probably have had your dose increased in 2018 based on these results on 50mcg :-29/10/2018 TSH 3.46
15/09/2018. TSH 3.00
this is too high for optimal treatment on Levo, does should probably have been increased then.
Also in 2019 :-
03/05/19. TSH 2.72
23/11/2019. TSH 3.49
again too high for optimal treatment. but if you felt genuinely well, i can see why they left it at 50mcg.
now TSH 5.56 FT4 1.29. Very cholesterol
"and she asked me if I had been taking my medicine properly. I have been taking it but at different times in the morning ..... I said a few hours apart perhaps.....
She told me to do a blood test in 3 months time and to go back to her.."
The time difference itself will have had no effect, but ....if this meant Levo was taken near to certain foods like coffee or calcium containing foods. or Iron tablets. then this could have reduced the amount you absorbed....effectively having the same effect as a slight dose reduction .. so lower fT4 would be the cause of TSH rising.
If this was the case then taking dose properly now ,away from food etc, would return the fT4 to previous level within a couple of weeks, (but you'd need to wait 6/8 weeks before testing to make sure TSH had time to react.)
There is no need to wait 3 months for TSH , it doesn't take that long to move.
However it is possibly wise to wait a bit more than 6/8 weeks if there HAS been a dose change (effectively) .. eg personally i find it takes me about 8/10 weeks to really know how i feel on a slightly different dose.
See this article about recommended TSH level to aim for 0.2- 2 healthunlocked.com/thyroidu.... Which also points out connection with high cholesterol.
See this Graph for most common TSH levels in healthy people ..it's around 1, not 3
i'm sorry .. i can't answer that question.. my own thyroid has always remained stubbornly boring (regardless of over , or under-medication or 'hyper' phase or hypothyroidism before diagnosis) and i've never 'felt' it (...neither has a Doctor)
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