I was diagnoised with hypo 2 years ago and still my TSH is 4.3 I have received lots of great info on this site and I am off back to the Doctors on Friday but my question is about my daughter. She is 31 with 2 children one age 5 one age 2 A year after her first child was born she was diagnoised with Celiac disease and now follows a gluten free diet but ever since then she has not felt well. She is constantly exhaused (I know 2 samll children are tiering but it is far more than just been shattered) she complains of bone pain feels cold all the time especailly her hands are feet and is always down in the dumps and has really heavy periods She has had several tests including thyroid TSH 4.1 on one test 4.5 on another but Doctor says she is in range so will not treat her and they have put in down to CFS. The only thing the doctor has given her is iron as she is low on it and calcium again test showd she is low. Does anyone know if she could be hypothyroid what with me having it and knowing it can run in families and also with having the celiac disease which is another auto ammune disease
Thankyou
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lucylocks
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Hi Browny, possibility your daughter is hypothyroid, she certainly fits the smptoms. Doctors make me furious, the symptoms you describle are common ones for hypothyroid. What is she taking for low iron and calcium? both being out of range under or over can cause a host of health issues. low calcium and bone pain, needs futher evaluation in my opinion, has she had vitamin D tested? if not ask for one with calcium and PTH (parathyroid hormone).
Yes it can run in families, its seems she can definetly tick a few boxes for Autoimmune D having one makes it easier to get another.
your best option here, would be to get a print out of all her test results with ranges and post on here then the more advanced people can give you more detail.
if you dont think your Daughter has CFS then you need to prove other? that means ask what your daughters normal TSH is, if told normal insist your daughter has common thyroid smptoms therfore her normal aint normal for her.
I would also look into her being tested private as i feel you are going to be fobbed of, sry, as nhs will not test ft3 and ft4 and antibodies if the TSH is normal ( not for her) you could ask doc anyway.
on a final note ask the GP why your daughter has low calcium and low iron it may be hormone related as all functions interlink.
somebody on here will clarify with more knowledge.
My daughter has had Vit D level tested Doctor said its normal at 51 but she does take 1000i.u daily anyway, she also had magnesium tested 0.8 and parathyroid tested Doctor said were normal. Doctor did not say what was making her iron and calcium low I think my daughter though it was to do with her celiac. I am thinking we both may make an appt. to see Doctor Skinner as we are both at the same G.P. surgery and do not seem to be getting anywher with them they even said to my daughter there is'nt anymore test they can do.
Thanks for your reply, she has had her B12 taken and they said it was in range but we all know what these ranges are like, I will get her to get the number most probably it will be at the bottom end
I too am frustrated to hear these stories of infuriating gps and their normal range/ CFS. Long story short is I was diagnosed hypo in 2004, I cannot tolerate thyroxine. My Endo would definately treat at the TSH that your daughter has. He would also test Ft4, ft3 and antibodies. My gp is insisting i have CFS. So I made an appointment for Monday night for the CFS clinic ( paid privately). The doctor who runs the clinic was away so I happened to see an Endocrinolgist who works at the same clinic as my previous Endo. He was brilliant and we didn't talk about CFS much as he said that diagnosis was for when they had eliminated everything else and I have hypothyroidism. Both Endos have told me that the Tsh is too high and needs to be around 1-2.
Could your daughter try to get a referral to see an Endocrinologist?
Thanks for your reply, we will have to go private because she is'nt getting anyway with the G.P. We are thinking of seeing one on the list provided on this site
CFS IS NOT a disease on its own. It is a symptom. Her doctor needs to find what it is a symptom of. Thyroid is an obvious candidate as you are hypothyroid.
She needs to go back to her doctor and say two things:
1) If she were being treated for hypothyroidism what TSH level would her doctor be aiming for?
2) Ask what possible harm it could do for her to try taking thyroxine. (This is what I did. I was near hysterical at the time and the GP gave in and prescribed it to shut me up.)
Before I started it was 5.6 (and had been higher in the past, I now know). It came down to 2.5 on 50mg and last time it was measured had come down to 0.2 on 75mg thyroxine. I take nutri thyroid as well, along with Nutri adrenal extra (as it seems adrenals are my main problem) and the usual range of supplements. It's probably changed again as I now take 50mg. I've always been ultra-sensitive to medication, so it didn't surprise me that a small amount made such a dramatic change.
Like many here, I'm still struggling to get the balance right, but at least I'm not bed bound anymore.
My daughter did once see an endo who did an adrenal test and gave her a dose of steriods for 4 days but then referred her to another endo who then refferred her to the CFS clinic where she goes once a month and they just talk and do connitive behavoriol
therapy (not quite sure the proper term or spelling) but this is not doing much to help
CBT does nothing to help treat your illness. It's aim is to help you cope with living with it. A total cop out. I was offered it, but was too ill to attend! And, of course, they don't come to you. It's quite clever really, in order to make use of their services you have to be well enough to get there.
Was your daughter tested for antibodies? It might be worth pushing GP for that test. ( especially if you are AI ) Or if he is really difficult any chance of trying a different gp? It is a shame to have to pay privately when the Nhs should do these tests.
I must admit that I am quite naughty when it comes to blood tests and have written them on the form myself if the gp won't do it. That's how I found out that my vitamin d was so low at 6. We should not be left to suffer in my opinion.
No she has not had anti bodies tested, after the last round of tests, iron calcium B12
Vit D magnesium, parathyroid, All supposedly in range except iron and calcium low for which supplements were given and B12 and Vit D just in range but no supplements given, G.P. said I'm sorry but there are'nt anymore test they can do
I read some good advice for when GPs are difficult. It may help to write a letter outlining symptoms of hypo, mentioning family history and insisting that it would be reasonable for antibodies to be tested. Ask for the letter to be placed in the medical file. Often if it is official the gp may be more willing to run the tests.
I am surprised that the Endos did not test for antibodies. It seems like maybe you got some bad luck with regards to doctors. There are some good ones out there too. It's like banging your head against a brick wall isn't it??
Maybe if you post asking for recommendations for good doctors in your area someone may be able to help.
You are a good mum looking out for your daughter. My son is 23 and he is still my baby!! Hope you get somewhere soon. Good luck !!
Hi browns,just want to add, magnesium is also another wasted test sorry, only 1 per cent is actually floating in the blood, the other is percent in the cells, which can not be measured, so the magnesium test is void. X
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