Hi, I've managed all be it very slow to get Tsh to 7.9 however Gp and endo keep saying increase dose, I'm on 75mcg when I increase by even very small amounts regularly I get palpitations and feel too sped up but tired.
I get anxious and feel awful. Cardiologist said take dose I feel ok On and stop there rather than adding beta blockers as endo suggested
Would I be ok to stick with Tsh of 7.9 if I feel ok, I may be missing out on feeling better but I certainly feel better than I did with a TSH of 30 last year. Any advice pls
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richard123
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What are the results? I was told by gp that b12 was fine even though private dr and endo said it was too low... b12 should be above 500 but better nearer 1000 and vitamin d over 100 - the others I'm not to sure to be honest
Just read your previous posts and you haven't had an easy time of it. To be honest I don't know what to suggest but a few things have crossed my mind.
Have you got the readings for your vitamin testing that you can post? They may not be as good as they can be. What brand of thyroxine are you taking and have you always taken that one? Are you taking any other medication for something else?
I'm thinking more information might be useful and throw up more ideas of where to go next.
Have a look at the Thyroid Uk site who run this forum. It's full of useful ideas and it may be, through no fault of your own, that you are doing something that isn't helpful. Getting things right can be a huge learning curve so there may be things you don't know about that are adding to your problems.
You refer to your TSH readings but have you had anything else tested or commented on?
Hi do you have your other results and ranges (T3, T4, vitamins). Considering your very low tsh I would take the increase... 75mcg isn't a lot considering. I find that when I increase I can get some of the same symptoms but they don't last and eventually level out, then I feel a bit better. I think that there is an element of your body adjusting but equally it may just be that you're on the wrong brand for you or you're lacking something else. Forget the beta blockers! They're no good for hypothyroidism and will just cause you more problems.
Thank you, I've seen endo privately, today I'm seeing NHS endo for the first time! Hopefully they will help. Seems like ok service, appt last week without seeing Dr for lots of blood tests so that they are ready to treat you!!! Fingers crossed.
I had palps all the time when on levo. Ask them to add some T3 to your dose and maybe you will feel better. Scientists/researches have shown that T4/T3 combination works for many.
Some people are intolerant to levo, maybe because it is synthetic and has to convert to T3. I am on T3 only and have had no palps since doing so although I know they are withdrawing T3 from being prescribed.
Levothyroxine is inactive and has to convert to T3. If we cannot do so effectively we remain ill. T3 is the Active hormone and it is required in all of our receptor cells. Have they tested both your FT3 and FT4 results? They should do as only T3 in our receptor cells will make us feel well.
Some don't get on with T3 or T4 but do fine on natural dessicated thyroid hormones. Even though this has been in use in different forms since 1892 prescribed upon our clinical symptoms alone and from then on we didn't die but NDT has also been targeted by the Associations as inconsistent and False Statements made about it. I think Big Pharma persuaded through monetary incentives to doctors/endos in the USA initially when levo was first marketed.
I saw endo, she said my symptoms don't match my TSH and that my Tsh maybe false due to assay, said she will resend to another lab as antibodies can affect results with standard assay!
Said reduce my dose to 50mcg, she said looks like gp is treating a number not a patient.... I'm confused as she said may take me off it all together, I was so rough with TSH at 30 and am scared I'll end up back there.
Symptoms belong to hypothyroidism (metabolism) (and I am not medically qualified).
The TSH belongs to the pituitary gland which rises when our thyroid gland struggles and I am sorry you aren't improving. I didn't and was far worse on levo than I was when TSH was 100 and undiagnosed. You just do not know what is happening and expect the 'experts' to know how to resolve the symptoms. Unfortunately that's not always the case.
One doctor, now deceased, has said we are given too low a dose nowadays according to the TSH and said said patients were put in a parlous situation by being under-dosed or undiagnosed. NDT may suit you better or the addition of T3. I can obviously only go by my own experience but sometimes a 'trial' of something other than levo might be resolve it.
The insistence by the Associations that levothroxine is the only one to be prescribed is ridiculous. We should be offered a trial of NDT or the addition of T3. We know our bodies best and when on thyroid hormones the symptoms tell us something isn't quite right.
Read the following by a doctor who only took a blood test for the initial appointment and thereafter only considered the patients clinical symptoms. I have none now.
He also would only prescribe NDT or T3 never levo.
The fact that your body seems to rebel if you try to raise levo might be a pointer. Did the Endo check your FT4 and FT3 and if you read about both in the following page, you will see why these two are very important but rarely tested.
Yes if post you actual vitamin test results and ranges. Members can advise. Mid range does not sound brilliant.
Palpitations and anxiety can be due to having too low dose. What were FT3, FT4 and TT4
Do you have high antibodies (Hashimoto's). If so have you tried gluten free
I had to increase to adequate Levo dose by also taking propranolol (beta blocker). It is not standard treatment, but a fairly common way of getting Thyroid hormones levels up if you really can't tolerate high enough dose. (But I actually had low vitamins and gluten intolerance. Didn't have this fantastic support group 20 years ago to know any of this. Endo certainly had absolutely no idea about vitamins or gluten)
How's your adrenal? I couldn't get to dose I needed till I supported mine, I had high low cortisol in the wrong places. A couple of weeks on Holy Basil did the trick for me. May be worth looking into
I have (or had) high cortisol. After I started treating myself with supplements to lower it I was able to double my dose of thyroid meds without suffering palpitations, anxiety, overheating etc.
As fibrolinda has said above, low cortisol can cause similar problems with raising thyroid meds high enough.
I tested my cortisol with a 4-part saliva test. Saliva testing is more reliable and tells you a lot more about cortisol levels throughout the day than a single blood test ever will.
Sounds like you have a crap NHS endo. FFS if you have had TSH of 7.9 you still need treatment! Don't forget to get your bloods done early in the morning and on an empty stomach and only drinking water.
If she threatens to take you off treatment, threaten to take her to the CCG/GMC/medical negligence solictor.
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