I just wanted to update on our gp accepting my daughters medicheck results. He did and he didn't. He arranged for her to have the same blood tests done again on the Nhs and although he put down for the lab to do both antibody tests they only did the one. Anyway although I don't have the Nhs results yet, the TSH came back at around 5.7. We asked him to do vitamin D which came back at 31. He has started her off on a loading dose of 20,000 iu 3 times a week for 5 weeks then 800iu afterwards. We convinced him because of her suffering to give her a trial of levothyroxine which he gave her 25 mcg a day. She started taking this and whether a coincidence or not started to have diarrhoea for a few days that subsided.
Since this she had to see a Consultant Ophthalmologist because she had a few changes in one of her eyes and also kept getting bad headaches or migraines. He thinks her eyes are fine but without her mentioning anything thyroid he said he thought her headaches were a result of hypothyroidism. Anyway he runs a multidisciplinary clinic with the endocrinology team and has booked her an appointment for January. He has also gave her a blood form which states TSH, T4, T3 both antibodies and strangely TRH.
Then yesterday because she is still under the endocrinologist here I managed to get her a cancellation appointment. I don't think he was an endocrinologist who specialized go thyroid though. To begin with he tried to tell her that nearly all her TSH results were normal and the couple that were raised a little could be from something else. He said the raised antibodies were nothing basically and he was about to say about her weight again. I told him I was hypothyroid and so was my Mother and also her paternal grandmother. He then changed tact and said oh I haven't seen you before, my colleague has, tell me what's worse for you. What a joke . Anyway she told him all of it, been diagnosed with ME and Fibromyagia a few years ago but had started having symptoms when she was 22 years old. Told him she was a Nurse that worked part time as she couldn't manage full time and was the mother of a 4 year old Daughter that she was struggling to play with etc half the time. What came out of this was that he thought she had mild hypothyroidism and I asked as she was on a low starting dose from the gp would he consider upping her dose to 50 mcg which he did. After that he decided from symptoms too that she had PCOS, although her ovaries don't have cysts but she hast other symptoms. Then as always got onto her weight, and the long and short of it prescribed her metformin even though she doesn't have diabetes, we know it's helps a bit with weight. Anyway she has had bad diarrhoea again and I know it can be a side effect of levothyroxine. She also has IBS but lately she has been a bit constipated which hasn't really been a problem much before. Do you think if it's the levothyroxine that it will go as she is worried that they are right and she doesn't have hypothyroidism and maybe this is why she has diarrhoea? She has suffered symptoms since she was 22 and is now 33 years old and isn't in a good place mentally as well as physically. They have had her on antidepressant after antidepressant and she is on a small dose now but I think all the years of being fobbed off has finally got into her head. I have always believed she had hormonal issues and believed all along she had hypothyroidism. Even at a young age she suffered badly with gall bladder issues until they took it out when she was about 21 years old saying that they had never seen such a large diseased gall bladder in someone so young. I would be grateful for any advice on the levothyroxine please and whether you think she should just trial that before starting that Metformin please? Thank-you
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One of TUK's Adviser's was an expert who stated that Fibro, ME and CFS were 'named' about ten years after the introduction of levothyroxine alone. He'd never prescribe levo- only NDT or T3 for patients who were resistant.
He also stated that some people needed higher doses of T3 because they have Thyroid Hormone Resistance. He'd never prescribe levothyroxine.
This is an excerpt from another link:-
"More on the Unreliability of the TSH Lab Test
Thanks to Jonathan Wright’s newsletter for bringing to my attention a recent article in the June 2010 International Journal of Clinical Practice by Dr. O’Reilly which summarizes the medical literature on this question of the reliability of the TSH test. (9) Essentially, Dr O’Reilly reviews the medical literature and the history thyroid medicine and provides all the medical studies and information showing that Dr Barnes and Dr Peatfield were right all along. (7-12). Here are a few quotes from Dr O’Reilly (9):
The use of the TSH measurement to assess thyroid status in patients on thyroxine (Synthroid) replacement could be considered a classic example of the misapplication of a laboratory test.”
Instead of the TSH measurement, Dr. O’Reilly recommends the T3 test for monitoring treatment with thyroid medication. He says:
“The adequacy of thyroxine (Synthroid) replacement should be assessed clinically with the serum T3 being measured, when required, to detect over-replacement”
We use the Free T3 measurement which is widely available at any lab.
In spite of the obvious need for a better approach to the low thyroid condition, there has been very little movement to rehabilitate mainstream endocrinology which dogmatically clings to the TSH test and synthetic T4 only medications (levothyroxine). Here in the state of Florida, we are fortunate that the state legislature passed a Health Freedom Law in 2001. This “Health Freedom Law” protects doctors and patients from unwarranted abuse or harassment for utilizing “outside of mainstream medical practices”, such as correct diagnosis and treatment of the low thyroid condition based on the wisdom of Drs Broda Barnes, Barry Peatfield, DS O’Reilly, Jonathan Wright, David Brownstein and many others. (14)
It's possible you could both need a bit of T3 added to the T4 ~ I was on 250/300mcg of Levo for decades before I found this forum and realised that I didn't have ME/CFS or FM at all, but actually needed to take T3 only...the T4 was poisonous to me, for some reason.
We're all different of course, but I think your daughter may have a B12 and/or folate deficiency. Have you checked the list of symptoms on the PA site? This happened to me because I was unable to absorb vitamins due to being hypo, despite my 'in range' thyroid tests...my folate level was below the range for years, and GP and 'specialists' failed to mention it, and so B12 had nothing to work with. I had virtually all the symptoms on the PA site for a B12 deficiency ~ bar the diarrhoea, and I thought I had Parkinsons or MS ~ GP said it was stress!😳
I would think the Metformin would deplete her B12 further, so I wonder if that's it. I know I'm unusual😊 but personally, if my B12 goes below 2,000 now, I begin to get symptoms returning. I take Jarrows B12 sublingual 5,000, and I do ok on them, but may fare better with injections, which I will obviously have to source myself in this crazy system. I only take methylated B complex with folate, no folic acid, as I think I probably have a MTHFR snp too...it's rubbish anyway. I also use Better You mouth sprays...all of them! They're great and avoid the gut, but always check ingredients. Magnesium is essential too and you need to find one to suit. Both magnesium and B12 seem to help with headaches.
Also, has she had her sex hormones testing....is she on the pill or have a coil? Oestrogen dominance usually occurs peri/post menopause, but I had bad effects from being on a high oestrogen pill in my youth ~ and then stopping! It's banned from sale now and on a 'highly dangerous' list...makes me wonder about stuff we're all taking now...I felt fine while I was on it😕. I hope you get some answers soon, I also have worries about one of my daughters at present...it's very stressful. Good luck to both of you🍀 x
Thank-you for your reply Mamapea1, well my daughter has just started on Levo 25mcg but we have found out it's Tevo and from what I have read on here, it's not good for a lot of people. She has started on 50mcg Levo different brand today so fingers crossed. Her vitamin D is low at 31 and she has been put on a loading dose of 20,000 iu 3 times a week for 5 weeks then 800 iu thereafter. Her B12 is showing its fine and folate just slightly low they said. As for me I have stopped Levo on November 14th as I have never felt well on it and not even with some T3 added, only a little better. I have been trying to contact on Endo since then to ask what to do and whether he will treat me with T3 alone. He still hasn't got back to me. He suggested I get the DIO2 gene test done myself as I was still symptomatic on dual replacement and since it's come back with one parent gene variation he thinks I should continue on dual replacement which I'm still not well on. I have started to slowly increase my T3 as I can't continue to be ill.
My daughter had her implant taken out and she is on magnesium supplement. I hope you and your daughter get well too. It's hard enough as we are ill but then harder as they are our children regardless of age. Sorry if I have missed replying to anything, my concentration and brain fog are awful. Thanks very much and good luck to you and your daughter was also x
I read something about PCOS and T3 too shaws, I wonder if it's the same one? It's more than likely your link that I've read...of course I've forgotten all the details now💭 x
I believe that doctors have been told that a TSH and T4 tests are sufficient. They aren't and is your doctor aware that he should check your daughter's TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. All blood drawn should be at the very earlliest, fasting (she can drink water) and if she was taking thyroid hormone replacements a gap of 24 hours between last dose and test should be allowed. There are private labs who do home finger-tip pin-prick tests and they post items to you and you send it back.It is accurate.
Yes I'm sure they don't know what they are doing. I don't think she has had free T3 and free T4. I will ask her. I paid for her blood tests at medichecks which are on my post 'will doctors accept medicheck results' The tests she has had so far are before she started levothyroxine which was last week.
Which brand of Levothyroxine is she currently taking?
Is she on strictly gluten free diet
IBS is often gluten intolerance
Does she possibly have lactose intolerance?
Both gluten and lactose intolerance are extremely common with Hashimoto's
NHS refuses to test TG antibodies if TPO antibodies are negative. We have many people on here who only have raised TG antibodies and struggle to get Hashimoto's diagnosed
She started taking Tevo and I didn't realise. The 50mcg she is starting tomorrow is Actavis so hopefully she will feel better. She has just had 1 baileys drink and she said she has gone hot and her heart is beating a bit fast. Is that normal? She has started to change her diet and try gluten free although do you think she should trial the Levo first for a few weeks? I have told her about the metformin too and also about the lactose. Thank-you for all your amazing links and replies x
Many people with Hypothyroidism alone struggle with gluten issues / feel better when they come off it. If you (she is) are going to want to do a gluten sensitivity test, then keep her on it until the test is done. Sorry - I don’t mean to suggest you are doing anything “to” her. Just easier to write this way!
And if you want to see whether new levo has better impact on stomach, give it a week more before starting gluten-free.
Poor girl. Hope she starts feeling better soon.
I hadn’t know about any overlaps PCOS and hypo treatment before - interesting.
If your daughter has a weight problem, Metformin will help. Initially, it does cause diarrhoea but that settles after a while. It is possible that weight loss could help with all her aches and pains too. Levo has never given me diarrhoea, so I’m afraid I can’t help with side but my TSH was 4.64 when I was diagnosed as sub-clinical hypothyroid. Two years later, I am now on 125 mcg & I feel amazing. Good luck to your daughter. x
She hasn't started the metformin yet because she got diarrhoea after taking 25 mcg Levo but then it eased off but then this morning she took 2 25mcg tablets of Tevo Levo instead of the 50 tablet and has had diarrhoea today. Thank-you for your story, it brings hope to me and my daughter x
Debs - One of the really very common side effects of Metformin is gastric upset - usually at the far end.
For some experiencing this it settles after a short, but variable, while, and for others, it just doesn't. There is a slow or extended release variant available, if it goes on a bit.
PCOS isn't solely a medication used for Diabetes, although it very commonly is. Less so in UK, but in many other places it is used to help with PCOS. As you note yourself, it can help with weight loss - it quite often dulls the appetite a bit.
I won't comment on anything else as you have some really knowledgeable people commenting already, and I'm still quite a newbie to hypothyroidism - even though it feels like forever!
She hasn't started the metformin yet because I told her to wait until she has trialed the Levo for a few weeks. Thank-you for your info, it help and we are very grateful. He gave it to help her weight more I think. Thank-you and I hope you are as well as you can be too x
If it doesn't suit her purchase NDT from Thailand. I have said this before to other members. I ordered some Thyroid S from a man in Thailand last year it cost me about £59 for 500 tablets which were 1 grain per tablet. They took 9 days to arrive and my postman delivered them to my door. Customs did not even stop them and the man I ordered them off emailed me a picture of my package before he sent them. I started off taking 1/2 grain and slowly increased to 1 1/2 grains I had no side effects from them. I had to stop them because my thyroid suddenly started work again so I did stop cold turkey and slowly I think this helped me go into remission again. I have Graves' Disease which sometimes makes me underactive for reasons unknown.
Sounds like the same place I bought from. I think, if I recall, I paid $USD99 for 1000, TR Man.
As I was in Thailand at the time, I had mine delivered locally, in day or so, about a week before getting home, then got home to find there's been an admin issue at their end, meaning I ended up with another batch waiting for me when I got home.
The irony is both packages are still shrink sealed, but that was always going to be my risk, if I didn't transpire to need them.
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