I have felt like S5$t for as long as i can remember- extremely tired all the time, brain fog, bad skin, aching joints......I have been to various doctors over the years who have all told me that the 50mcg of levothyroxine I have been taking since my daughter was born 12 years ago is the correct dose.
The last one said I had CFS or ME and suggested acupuncture. I do have an acupuncturist, so have been seeing him for 6 months now without much improvement to be honest ( he does help with my achy knees) but last time I saw him he said ' get your thyroid checked again they don't always give the right dose'. ..
I have now read all about T3 and the blood tests, and am going armed with paperwork and will demand my blood test results when I go on Friday.....I am now SURE it is all to do with my thyroid, and have a back up plan of going to a private doc if my own doctor fails to help me with this.
I have just started taking Selenium with my other supps ( B vits, Vit D, multi vits, all reccomended by my acupuncturist) and plan to start taking my Levo at night before bed .
Anyway, after all the stories of poor doctors, just wish me luck!!!
I WILL be well again!!!!
Written by
cal1971
To view profiles and participate in discussions please or .
Yep that a familair tale. You could ask to bounce your thyroxine, say 50mg one day, 75 the next and see if things feel better or worse.
Rem the extras you are taking will show up in bloods and give false readings. When or if you get bloods, stop all but what Dr gave you thyroxine and any other medication they put you on. That way they can see what is going on not say oh thats fine and it is now you are taking supplements.
Trouble is low dose and a high dose cause problems, finding the right one is the key. Good luck , be firm but fair.
If pushed you can say if the wall is a bit deaf or dissmisive. Dr you are saying Im normal and therefore in your medical opinion you are stating there is no need to change the amount of thyroxine I am on. Also you are stating that my other symptons I am experiencing that again it is in your opinion are not caused by my thyroid. Please would you put that, now in writing on the surgeries headed lettering and sign it. Thank you, I'd like to have it before I leave the surgery.
They wont do it. They wont commit to that as it can bite them back. You are not asking for anything out of the ordinary.
Thats you door wedged open moment to force the issue of why are the symptons occuring and what is he/she going to do about it?
I did that at my friends Endo appointment, and low and behold shes had numerous bloods taken and a scan that showed her thyroid was inadequately medicated and she now had Hashis and infection in the thyroid.
Hi please insist on seeking a referral to endo and ask for further testing on adrenals as I had exactly same exp been on 125mg levo for over 25 years and never felt well, had no eyebrows and like you for last 6 years had cfs and fybro and getting worse but having seen endo and further tests showed I have hypopituritism which has affected 3 of the endocrine axis being thyroid growth hormone and cortisol, have started treatment but can take a year to get all in sync again , have proven and endo agree that tsh levels in blood tests for these probs do not work as there is conversion problem in cells and has agreed and written to my docs to say this should be treated by symptons, its a long road but hopefully light at the end as I like you had little quality to life but I am slowly making some progress all be it on steroids and further tests. Please look into adrenal probs as if not functioning prop then thyroid meds are not working efficiently and tsh results are not correct. I wish you well and keep us posted
Unfortunately some endos like mine say that adrenal fatigue does not exist and would not consider doing adrenal blood tests, at an NHS hospital. I feel there is no point in being referred to the same hospital again. That is my experience with asking about adrenal function.
He should be able to offer you a short synthacen test for low cortisol that was how I got diagnosed, or ask to see another endo who knows of all the adrenal probs , my endo is very knowledgable on these and has undergone load of testing with very intriguing results, so please do not give up, we all have to fight for our health.
I have felt the best on 10ug T3 with enough thyroxine to keep my TSH around 0.5. If my TSH goes above 2 I don't feel so good. If you go onto T3 maybe try 5ug to start with. If you are on T4 only then you want to aim to have your T4 high in the range and TSH low to compensate for the lack of T3. If you are on T3/T4 then you may find you are ok with a T4 that is more mid range eg 14-15. Also I found 20ug T3 was too high a dose. Hope that helps.
Your dose of 50mcg is too low. If we are undertreated we can then get additional diseases or the GP treats symptoms as other than due to the thyroid gland.
This is a link and if you cursor to the question dated April 22, 2007. It is an archived site and the links within may not work but there are other topics at the top of the page.
There are two potential sources I know of for people feeling awful when they are on T4-replacement. One source is the extremely low dosage that doctors typically prescribe nowadays. A low dose of T4 can effectively reduce TSH secretion. The lower TSH can in turn lower the thyroid gland’s output of thyroid hormone. At the same time, low-dose T4 may not compensate for the thyroid gland’s reduced output of thyroid hormone. The patient then has too little thyroid hormone to properly regulate the metabolism of most of her body’s tissues. She then ends up with abnormally low metabolism and troubling hypothyroid symptoms. I’ve written about this before on drlowe.com.
Thanks to all who commented- have taken all suggestions into account and now feel ready to tackle the doc- who knows, she might well listen!Will keep you updated!
You are a brave and resourceful person and I hope all goes well on your next visit. I do have a question. Why does your doctor assume you are OK on 50 mcgs of thyroxine after 12 years and giving birth to a child. Is he/she looking at blood tests. You say that you are going to make sure you get your blood tests next time. I think that is great because, as we well know, GPs tend to suffer from confusion and poor memory. You could perhaps post them on here. Are you going to ask for T3?
So, this is as close as they come to mentioning the possibility of Adrenal insufficiency!
However, in my mind it is perfectly clear that you don't treat with Levo until you have adequately established that adrenals are strong and healthy enough to take it. Why ever would they disregard checking at least first?
Mindboggling!
I wonder what their version of 'other causes predisposing to adrenal insufficiency' are?
.......................................
'Patients with panhypopituitarism or other causes predisposing to adrenal insufficiency may react to levothyroxine treatment, and it is advisable to start corticosteroid therapy before giving levothyroxine to such patients'.
Whoah. Theyve given me medicaiton I am not supposed to take with my malaabsorption issues and heart problems and the do not take if your on that medication. . Oh boy I am going to enjoy my holier than thou preaching to my GP about that. No wonder I feel ill then.
Ooh I like this bit. "The maintenance dose is generally 100 to 150 micrograms per m2 body surface area. "
I created a spreadsheet for estimating total levothyroxine dosage after a total thyroidectomy (usually the only time that you need to go straight onto a sensible dose). It is here:
Hi, have you had your B12/vit D etc tested, I felt the same and was convinced it was my thyroid (I'm also still on 50mcg after many years), don't think B12 is included in a full blood count (Stupid I know), anyway went to see doc asking for an increase in levothyroxine but he said before he did he would test everything and it turned out I was B12 deficient, it causes very similar symptoms to UAT, but if you are taking supplements they will affect any blood test
I second that. B12 was a problem for me too and a lot of my symptoms improved when I got my B12 levels sorted. I wasn't deficient according to my doctor (6 points above the bottom of the range doesn't count), but I had all the symptoms so treated myself.
I think part of the rationale is that if you are low in B12, then you get macrocytosis (enlarged red blood cells) shown as Mean Corpuscular Volume (MCV) in a full blood count.
But iron deficiency (which seems so common among hypothyroid people) works in the opposite direction and can make MCV look normal!
Only a raised Red Blood Cell Distribution Width (RDW) would then tend to point out the issue. But that is not always done.
I was on 50mcg and told my blood test results were 'normal' for three years after having my son. I was very ill and had all the typical hypo symptoms. GP after GP and a particularly obnoxious endo dismissed my concerns that my thyroid was causing the symptoms. I was told I had depression, CFS, Fibromyalgia and frozen shoulder. The obnoxious endo even told me I had probably been misdiagnosed in the first place!
Eventually, with plenty of help from the people here, I managed to convince a GP to increase my dose. I used Dr Toft's book (below) to make my case. On page 88 it says that some people don't feel well unless their T4 is at the top of the range even if their TSH is in range or low. My TSH was low but my T4 was near the bottom of the range. My GP recognised that the book is by a respected author and agreed to follow the advice in it and gradually increased my thyroxine until I felt well and my T4 had increased.
I am now taking 150mcg of thyroxine and I'm feeling so much better, If you don't have any luck with your GP then try the Dr Toft book or change GPs. Eventually you will find someone to help. I must have seen about 8 different GPs before I found one who would listen to me. Hopefully you won't have to go through that and your current GP will listen to reason.
I have posted a new thread about what happened- I am vegetarian ( have been for over 25 years) and my iron and B12 are always fine- she did a full range blood test in July last year that covered everyting. I do take B12 anyway, and a variety of other supplements, including Vit D and now selenium.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Multivitamins 
Test results
Desperate for help for Dad
Further to My Fist Question
My Endo didn't listen to me, what do I do?
