Thyroid questions + recent bloods

[Needleandthread44]

Hi all,

I posted a few weeks back regarding my Dad (72years old, hypothyroid, been on levo for years, recently increased dose from 75mcg to 100mcg due to bloods showing TSH 4.68 (0.27 -4.2) and T4 16.7. T3 and antibodies had never been tested.

He has a history of low b12 and low folate but the root cause has never been looked at and it is just treated with oral tablets (symptoms don't improve). Having done some research I now suspect it is due to low stomach acid, which has possibly even resulted in SIBO (he was also on tablets for his stomach while on a long term course of steroids which I think contributed to the problem). He is due to see a gastroenterologist at the end of July. He is also booked with an endocrinologist for September.

He is currently on 5mg on Folic Acid since his level in April was 3.4 ug/L (3.89 - 26.8). He was having b12 injections administered privately (GP wouldn't prescribe them) and felt a benefit but is now just taking a b12 spray, but it doesn't seem to be doing the same job! His doc had never tested for ferritin or Vitamin D so I requested these along with thyroid antibodies.

The lab refused the Vitamin D test for some reason so we will have to redo (I am going to order private test anyway from medichecks for thyroid+vitamins once he has been on his increased dose for 6-8wks).

The results we did get back showed:

TPO Antibodies: 218 (So definitely Hashimotos?)

Ferritin 181 (30-400)

Iron: 16.2 (10-30)

Any thoughts on these?

Some other questions that I have.. (a slightly random list!)

- He is on 5mg Folic Acid, has been for 2 months. Is a methylated version always a better option? I am wondering if we should switch now.

- Dad has awful itching in his ears. Can this be a thyroid related issue? Anyone have any remedies?

- The serum b12 tests have been showing his levels around 400 (before b12 injections). Have others found the active b12 tests to be more accurate?

- He drinks black tea possibly half an hour after his Levo. Should this be avoided? I think he thought it was ok as no milk etc.

- Has anyone tested for the MTHFR gene variation? Is this worth knowing and how easy/difficult is the test? Also is it pricey?

- Any suggestions for what we could specifically ask/tell the gastro/endo consultants? Paying a lot to go private so want to make the most of the appointment slots.

A million thanks to everyone who has responded to my previous posts. I truly appreciate it.

[SlowDragon Administrator]

recently increased dose from 75mcg to 100mcg due to bloods showing TSH 4.68 (0.27 -4.2) and T4 16.7.

TPO Antibodies: 218 (So definitely Hashimotos?)

Yes

Which brand of levothyroxine is your Dad taking

Being under medicated for thyroid causes low stomach acid so getting better thyroid levels should help

Suggest you wait and retest again 6-8 weeks after recent dose increase in levothyroxine

Important to test vitamin D, folate and B12 too

Has he had coeliac blood test

[Needleandthread44 in reply to SlowDragon]

Thanks SlowDragon. The brand is Aristo.

He was last tested for Folate and b12 in April so GP wouldn't test again so soon. I will get tested privately through medichecks.

He had coeliac blood test last year which came back negative. Not sure if there is any point in retesting?

[SlowDragon Administrator in reply to Needleandthread44]

No point retest coeliac

Always worth trying strictly gluten free diet

5% Hashimoto’s patients test positive for coeliac, but approx further 80% find strictly gluten free diet helps or is essential

[shaws Administrator]

As far as I'm aware any person in UK who has been diagnosed with Pernicious Anaemia get regular B12 injections.

My mother had this condition (and I also have it). Unfortunately my mother developed stomach cancer and I am sure it was due to the withdrawal of B12 injections as her GP said her 'blood test' was fine so needed no more injections. Both my sister and I thought at the time that was 'good' but it was not - we had to plead for more pain relief when she was dying.

People who have/ or think they may have Pernicious Anaemia should be given a blood test to confirm or not that they have the need of regular B12 injections.

My GP told me I can have as many B12 injections as I feel I need. I get them monthly now instead of quarterly.

[Needleandthread44 in reply to shaws]

Sorry to hear about your Mum. The GP does not believe my dad to have pernicious anaemia based on a negative intrinsic factor test. I requested the parietal cell antibody test but they wouldn't do it. Unfortunately there is no golden standard test to show whether you definitely have it. And when I told his doctor that he responded well to the b12 injections, he said it was probably just placebo!!

How do you test your own b12 levels?

[shaws Administrator in reply to Needleandthread44]

GP's surgery tests when I request. As I feel well I don't need many blood tests for B12.

No wonder we get annoyed when a simple blood tests can reveal of a deficiency.

[shaws Administrator]

My mother's B12 was withdrawn when her GP told her 'your B12 is good so you need no more B12 injections'. Both my sister and I thought that was 'good' as P.A. was now rectified.

I have had few blood tests for B12 as I'm getting monthly jabs.

If we have pernicious anaemia our bodies cannot absorb B12.