Thank you to everyone who replied to my last post requesting help for my daughter. As a recap, here is bit from that post... 'she has been suffering for almost 2 years now with extreme fatigue, no energy, almost daily headaches, heavy periods, brain fogginess, not remembering events that friends have talked about, inability to walk far without getting painful legs. She had been going backwards and forwards to her uni’ GP but got nowhere (although we have since found out that CFS was added to her notes, yet nothing done about it). She has now finished uni’, moved home and is having to start again at a new practice'.
At her initial appointment she was tested for Lymes, Pernicious Anemia, Diabeties, a full blood count, TSH & FT4 and referred to an Endo, as the GP didn't know what to do about her high Thyroglobulin antibodies results and a strong family history of Hypothyroidism. A few days after the appointment she also received a letter saying she had been referred to Mental Health (No mention of this at the appointment!!)
Following on from my post we took on board all of the advice given here and over on the PA forum, and went back to the GP armed. After the appointment we both sat in the car and had a good cry. I won't swear but he was an absolute *bleep*
In summary he said...her TG antibodies weren't high compared to others he'd seen, her B12, Folate & Ferritin were in range so he wouldn't do anything (despite all the guidelines we told him of), he wasn't interested in the possibility of an absorbtion problem. He said we shouldn't get hung up on blood test results and wasn't interested in the unreliability of tests such as Lyme and PA. He insisted that the Endo will do something about her B12, folate & ferritin if they thought she needed treatment. He also said she had been referred to Mental Health as they had exhausted all of the physical things they could do to help her, so it must be a mental thing!! My urge to thump him at this stage was mounting. I wish I could have recorded his words, it was staggering. He really was a complete *bleep* It didn't matter what we said, what back-up evidence or guidelines we had. Despite standing our ground, we got nowhere. We listened to his c**p and left with nothing other than maybe an anti-depressant was what she needed!!!!
So I'm back here hoping that you can help us to do it ourselves. I will also post over in the PA forum for their advice too. I can't sit back for her to go under range with her blood test results before her GP will help. She's now started her first job so it's important she doesn't get any worse. For your information here is a reminder of her results…
May 2017 (NHS)
TSH 1.96 (0.27 - 4.2)
FT4 18.9 (12 - 22)
FT3 5.6 (3.2 - 6.8)
Serum B12 303 (180 - 700)
July 2018 (Medichecks)
TSH 1.59 (0.27 - 4.2)
FT4 16.6 (12 - 22)
FT3 5.35 (3.1 - 6.8)
TG ab 280 (0 - 115)
TPO ab 16.4 (0 - 34)
ACTIVE B12 53.1 (25.1 - 165)
FOLATE 3.84 (2.91 - 50)
FERRITIN 46.5 (13 - 150)
VIT D 70.1
August 2018 (NHS, mid day and non-fasting)
TSH 0.6 (0.35 - 5.5)
FT4 18.5 (10 - 19.8)
Serum B12 226 (211 - 911)
FERRITIN 22.2 (10 - 291)
FOLATE 7.6 (>5.38)
She is already addressing the Vit D. Dionne at TUK sent me the article by Dr Toft recommended here but there was no mention in it on what to do with normal TSH, FT4 & FT3 level with high TG antibodies. Our plan is to try and raise her B12, Ferritin & Folate levels ourselves and use Medichecks for retesting. If anyone thinks we shouldn't do all this ourselves then please say but if we're good to go, here are more questions...
1. Assuming the TG antibodies are Hashimotos (rife in our family of females), can the Endo do anything or will we have to wait for her thyroid levels to show signs too (high TSH, low FT4, FT3). If the Endo can do something now, based on the antibodies, has anyone got the guidelines that the NHS should follow?
2. Of the B12, Folate & Ferritin, which would you advice to address first?
3. Re B12, I have a supply of Solgar 5000 Methylcobalamin & Jarrows 1000, should we need them. What dose would you suggest to start and for how long before a retest?
4. I already have Ferrous Fumerate 210, for the Ferritin... again, how much and how often before a retest?
5. I understand about taking a B Complex to balance the B vitamins and I personally use Thorne Basic B as it contains methylfolate rather than folic acid. My daughter struggles with swallowing large capsules so does anyone know of a similar B Complex either in a smaller tablet or even a liquid version?
6. Is it worth us at this stage (before sorting out the B12, Folate, Ferritin & Vit D) paying for a private cortisol test or do you think we would be better off sorting the obvious low vitamin levels and if that doesn't 'fix' her, then doing the cortisol test?
If there's anything I've missed then please shout ☺
Again, thank you to all of those for their input last time and for hopefully steering us forward.