I have written a couple of posts about my situation and recent test results that I have received. Just to summarise: I have Hasimoto's and Auto immune PA. I currently have 3 monthly B12 injections and take 175mg of Levo. I've also started taking Centrum multi vitamins and I have gone gluten free (only into my 3rd week). Basically although the IBS type issues have eased since going gluten free, I still feel as rubbish as usual. Main symptoms, shakes, excessive sweating, brain fog, extreme tiredness, breathlessness when doing very little activity/exercise. On my first post a lot of people suggested over medicated which I also thought but not the case according to the docs!
Here are my results
(Around May time)
Thyroid receptor antibody 1735
TSH 3.81
Recent results - from the 5th September
Ferratin 5 ug/L (15-200)
Vitamin D 15.2 ug/L (>20)
Calcium 2.22 mmol/L (2.10-2.60)
Folate 4.9 ug/L (3.1-19.9)
ESR 15 mm/h (5-15)
CRP 16.2 mg/L (<10)
TSH 6.74 mu/L (0.40-5)
Free T4 11.9 pmol/L (9.0-19.0)
Vitamin B12 211 ng/L (150-620)
I was also told to look at ANA results, Rheumatoid Factor and FT3 although I can't see these on the list unless they go by another name? (I'm looking at getting a FT3 test privately)
Other results on the list that were out of range were: (I don't really know what some of these are??)
Zinc 8.4 umol/L (10.0-21.0)
HCT 0.368 (0.37-0.47)
MCH 26.2 pg (27.0-33.0)
RDW 15.7 % (11.5-14.5)
Urea 2.4 mmol/L (2.5-6.7)
ALT 37 u/L (10-35)
(Liver, bone and protein profile) Albumin 33 g/L (35-50)
Androgen SHBG 179 nmol/L (18-114)
I saw the doctor who said to see what the consultant suggested regarding the low results (even though I'm still waiting for a follow up appointment) I then got a call on Monday from the GP surgery saying that the consultant had asked my GP to put me on zinc sulfate 125mg a day.
I thought more would have been done or suggested rather than just zinc supplements! On my results my Ferratin levels had an exclamation mark written next to it by the consultant although nothing has been mentioned. It will be a good couple of months before I go back to see the consultant and he's already tried to fob me off with chronic fatigue.
So i feel I have to make myself well instead of relying on someone else to! I would like to feel 26 again rather than 70. Also if the thyroid medication is working should my TSH not be falling rather than rising? 3.81 to now 6.74. I'm not that clued up on it.
Confused, fed up and getting really impatient.
Thanks for those who have given me advice already, much appreciated!
Sarah x
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Sjp88
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Do you think maybe seeing a nutritionist could be of value? There's just so much deficiency right across the spectrum. Vitamin and mineral supplements are fine, but you need to rebuild yourself with nourishment too. They must be able to take into consideration that there are gut problems and help you to heal them. It will probably take quite some time to rehabilitate. 3 weeks without gluten is a good start but you can't expect huge change in such a very short period of time.
You need a rise in thyroid medication as you say yourself, your TSH is rising, so are not on sufficient. Email louise.warvill@thyroiduk.org and ask for a copy of the Pulse Online article by Dr Toft of the British Thyroid Association and read question 6 and refer your GP to it as well.
I see Gabkab has made good suggestions I wonder what your GP is doing about Vit D and ferritin levels in particular. I doubt he knows what he is doing. Ferritin should be between 70-90 and he should prescribe
I would also say that you need to supplement with methycobalamin sublingual B12. We should aim to be in the higher range. As you are not deficient your GP probably wouldn't offer you an injection.
This is an excerpt from another thread:-
In adddition to B12 her folate is low and I would recommend folic acid for 3 months. Ferritin is optimal at 70-90 and vitD 75-200. I'd supplement 5,000iu vitD3 for 6 weeks to build levels and then cut back to 5,000iu on alernate days.
I responded to one of your earlier posts, and made some suggestions, but I was vague on the details because I assumed (hoped?) that your GP might actually do his job and prescribe for you. But if he hasn't and you are left to your own devices then I'll make a few suggestions :
Ferritin : To improve this you need iron supplements. My ferritin was very low last year. After practically going down on my knees and begging, my doctor prescribed ferrous fumarate 210mg, to be taken three times per day. When I collected the prescription I discovered, quite by accident, that I could buy them from the pharmacist without a prescription. The pills are sold in boxes of 84, which is enough for 28 days. Each box costs just over £4. I buy from Lloyds Pharmacy, and apparently some other pharmacies sell it too. I've read that Boots insists on a prescription. Shop around. With each iron pill I take 500mg - 1000mg of Vitamin C - I use Vitamin C powder rather than pills, but it doesn't really matter what you use as long as you can tolerate it. The vitamin C helps your body to absorb the iron, also helps to mitigate any constipation you might get caused by the iron and, as a bonus, is good for your adrenal glands too.
I continued buying ferrous fumarate for myself and I've been taking it now for nearly 18 months. Obviously iron taken to excess is poisonous so I pay for my own blood tests every few months - full blood count, ferritin and an iron panel. I'm still plodding slowly towards mid-range and I feel so much better for it.
Vitamin D supplements : Always use Vitamin D3 supplements, NOT vitamin D2. If the supplements don't say what they are don't buy them. D3 can be bought as a liquid or as pills, the choice is yours. I'm not very familiar with the treatment levels needed in severe deficiency, but I would have thought 10,000 iU per day would be a good start, and should be maintained for a few weeks before reducing. Home testing can be done relatively cheaply using this site - it currently costs £28 :
Zinc : I don't think it is a good idea to take massive doses of Zinc. However, when zinc levels go up, copper levels go down, so it may be a good idea to take zinc and copper together. I've been taking one a day of this one, but there are no doubt loads of other brands to choose from :
I don't feel able to comment very sensibly on any other supplements you need, sorry. But you clearly need more folate (methylfolate is supposed to be good but I've never taken it myself), and your B12 urgently needs to be supplemented. If you can get injected B12 (something I know nothing about) you will get your levels up quicker, but if you have to rely on pills or liquids, then make sure you use sublingual methylcobalamin.
Regarding your thyroid-related results... You obviously need a higher dose of thyroid meds, but persuading your doctor to do this might be difficult. Getting your Free T3 measured would help but that could be difficult too. I'm afraid I've given up on the medical profession now. I treat myself.
I should also have said, about Vitamin D supplementing, that you will be more successful in raising your levels if you take the supplements with your fattiest meal of the day. I used to try and eat a diet low(ish) in fat. I've learned the error of my ways now and I eat loads more fat - but I make it a rule, when I have the choice, to only eat fats that would have existed and been eaten 500 years ago. So - butter, lard, beef dripping, saturated fat on meat, coconut oil and olive oil are all on the menu in generous quantities. My vitamin D was too low for my liking, but wasn't outrageously bad, so I started supplementing with 1000 iU per day. My levels actually dropped. When I increased to 3000 iU per day and increased the fat in my diet my levels started rising.
With regard to diet - since eating lots more fat my brain fog has reduced, and I feel more energetic and stronger. I have also lost my sugar cravings for the first time in years.
Thanks for that human bean, great advice I will definitely check out the pharmacists for the Ferratin and Vit D. I have the zinc on prescription now and I received a letter yesterday from the endo asking the doc to increase my thyroid meds. Thanks again
TSH should come down when you take thyroxine. If it goes up, then it clearly isn't working (your body can't convert it to T3), and you should be put on liothyronine (T3). If that doesn't work then you need to try Natural thyroid hormone.
My TSH went up each time they increased my thyroxine dose (3 times) and in the end I had to refuse to leave the GP's consulting room until I got an appointment with an endo.
Hi Hypopotamus, Thanks for the advice, this is what really confuses me, I see an endo and he has said there is not much he can do except refer me to a chronic fatigue clinic. Plus I got a letter yesterday and as well as my zinc supplements they have said to increase the thyroxine yet again. However like you said its clearly not working so I don't know how long they will keep increasing the dosage for before they actually notice! Thought the endo was supposed to know stuff like that!
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