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.
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janey1234
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You can order the test several times during September if you want, but the tests must be used within six months. To get all the appropriate packing you need, you should order one test several times, rather than one order with several tests.
It is perfectly possible for someone to have low ferritin, high serum iron and blood which is already highly saturated with iron. Under those circumstances any iron supplements are likely to end up increasing the already high serum iron and saturation rather than increasing the ferritin.
If your daughter's serum iron is also low along with the ferritin then supplementing is a good idea. The maximum dose of ferrous fumarate 210mg is 1 tablet, 3 times a day. It is alleged to be absorbed better on an empty stomach, but a lot of people (including me) can't tolerate it this way, so have to take it with food. If your daughter struggles with the iron then taking 1 tablet, 2 times a day is worth trying. If she still doesn't tolerate it then she'll have to find a different supplement.
It is always worth eating liver or liver pate or black pudding once a week as well as supplements if your daughter eats meat. Don't eat liver more often than this because it contains a lot of vitamin A which should not be overdosed.
Along with any iron supplements or foods high in iron it is essential to take vitamin C with each dose of iron. This helps the body to absorb the iron and also helps to reduce the problem of constipation with high intake of iron.
Iron is poisonous in overdose, so keep supplements away from children. Also, get re-tested fairly often (every 6 weeks to begin with - reduce this if improvement is very slow) to make sure that the iron, transferrin saturation and ferritin levels don't go over optimal.
Thank you humanbean ... can you just clarify what you meant..."To get all the appropriate packing you need, you should order one test several times, rather than one order with several tests". We've read it back several times and didn't understand...lol.
If you order one test you'll get sent the things you need to prick your fingers, a tube to drip blood into, labels for the tube, a form to fill in, and a suitable envelope to send it back with.
If you buy three tests on one order you'll get all the above times three, except you'll only get one envelope.
If you order one test, then a second order with one test, then a third order with one test you'll get all the above for three tests, and also three envelopes.
Like your daughter I can't swallow large capsules. I use to take Jarrow B-right by opening up the capsule and tipping powder into a cup. Then tip powder into hand and swallow with water
Alternatively now , I have found and prefer, Igennus Super B complex. Also good quality ingredients, folate, not folic acid and nice small pills. (Also don't turn your pee such vibrant yellow!)
Suggest she starts with B complex. Recommended to take B complex in morning generally. Starting with just one in morning. (Igennus recommended dose is 2 per day, one am and one pm) perhaps increase after week or so
If she has symptoms of low B12, adding in a daily sublingual B12 (Jarrow 1000mcg) Initially she may need 2-3 per day
Eating liver or liver pate once a week should help improve ferritin
How much vitamin D is she supplementing?
Better You vitamin D mouth spray is good as avoids poor gut function
It's trial and error what dose each person needs. Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk
Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D
Lastly consider trying strictly gluten free diet for 3-6 months. If it helps stick on it
Only add one supplement at a time or make one change at a time and wait at least 10-14 days to assess
Retesting full Thyroid and vitamins 6-8 weeks after making all changes
All thyroid tests should be done as early as possible in morning and fasting
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Thank you SlowDragon ... will look up those Super B Complex.
She has been gluten free since the beginning of the year and is definitely feeling the benefits. Any slight hiccup is obvious!
Is already taking Better You 3000 spray with a seperate Vit K2 Mk7 and is now going to add in the magnesium. She was bordering on deficient last December and following advice here, we got her level back up to 150 but didn't then continue a maintenance dose, so her level by July had dropped to 70. This time we will be sure to do the maintenance dose bit once we've got it back up to a decent level.
We always do the Medichecks thyroid tests before 8am & fasting and going forward she will stop the B Complex a week before.
The bit I think I need help still with is regarding her Endo appointment and her high TG antibodies.
Thorne Basic B - you can open the capsule and mix the powder with orange juice. I rang them and asked about this when I first started taking it as I was taking so many capusles of one sort or another and couldn't cope with them all.
If thyroid results stay similar to this, then it's difficult to get anyone to agree to medicate
But often with improvements in vitamin levels then TSH rises as better vitamin levels enables thyroid hormones to be used, revealing thyroid issues in the blood tests
Strictly gluten free diet helps gut heal and can help improve vitamins too
That's really interesting. We shall leave thyroid testing a bit longer then. Get the vitamin levels up first the retest all again. She has been GF since the beginning of the year and it's made huge, positive impact already. Hopefully the Endo appointment will be months away.
Don't be surprised if endo is completely dismissive of gluten connection or disinterested in vitamin levels
Very few traditional endo's seem aware of the complexities of thyroid and digestion
An endocrinologist only studies the endocrine system, usually focusing on diabetes. Gastroenterology is an entirely different system ......another world
Oh I know this already (I have the t-shirt...lol). When my daughter's GP said that the Endo would deal with the B12, folate and ferritin, along with all the other rubbish he spouted, we knew we were not going to get anywhere with him. We asked about the possibility of an absorbtion problem, and therefore possibly seeing a gastroenterologist, and he insisted that Mental Health was the next step.
He wasn't going to budge....he knew best...😠
We will fix this as best we can ourselves and maybe over time 'proper' Hashimotos will rear it's ugly head for her too and she will get treated. At least then we will know exactly what to do.
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