I’m new here and seeking advice re next steps - Thyroid UK

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I’m new here and seeking advice re next steps

JCMK
JCMK

Hi, this is my first post, hope I’ve done it correctly. Briefly, I was diagnosed with Hashimoto’s February 2018 with TSH of 18.13 (0.40 - 4.50), T4 was low in range at 7.7 (7.00 - 17.0), T3 was not tested, antibodies were >1000. I was started on 50mcg Levo for 5 months with little effect, this was increased to 75mcg in July at my request and I feel slightly better. I paid for a Medichecks blood test in June results were as follows, ranges in brackets:-

TSH 3.94 (0.27 - 4.20)

Free thyroxine 12.6 (12.00 - 22.00)

Free T3 4.08 (3.10 - 6.80)

Thyroglobulin antibody 95.7 (0 - 115.0)

Thyroid peroxidase antibodies >600 (0 - 34.0)

Active B12 61.30 (25.10 - 165.00)

Folate (serum) 3.37 (2.91 - 50.00)

25 OH Vitamin D 33.5 (50.00 - 200.00)

CRP - High Sensitivity 8.15 (0.0 - 5.00)

Ferritin 33.7 (13.0 - 150.00)

I could see none of the levels were great and after reading postings on this forum I started to supplement Vit D with better you spray Dlux D+K2 oral spray 3000iu and magnesium malate. I had a blood test at the GP surgery in September following increase in Levo to 75mcg and asked for my Vit D to be checked too. The GP contacted me to say my Vit D was in the insufficient range and prescribed Hux D3 20,000iu (500mcg) daily for two weeks then fortnightly. I began to feel a bit more alert when taking it daily but now it is fortnightly I feel more tired again.

Question - if I am taking the Vit D fortnightly do I still use Vit K and magnesium daily? (I know it sounds like a daft question but if I don’t need to take them then I don’t want to).

I am now looking to address another of my results but I am unsure which to tackle next B12 Folate, ferritin? and would appreciate some advice on next steps.

I am not gluten free, I am a faddy eater so would struggle to remove it from my diet at this time however, I will give it a go in the new year when hopefully my head will be a bit clearer and I have the energy and motivation to plan meals.

I will be doing another Medichecks blood test in a couple of weeks but wanted to ask about the timing of my medication. I now take my medication when I wake during the night, this is usually between 04.00 and 06.30, it means I can go about my normal routine when I wake up. When I had my last GP blood test I had just started doing this and omitted taking my Levo as usual. This meant I had left longer than 24 hours between last meds and blood test. Would this skew my results? I know my TSH was below 1 for the first time following that blood test (range as above). What do others who take their meds at night do before a blood test?

Apologies if this is a bit rambling, I’m recovering from a heavy cold and cough so I’ve a bit of a woolly head.

The information and advice on this forum has been a great source of support following this diagnosis and I hope in the future I will be able to provide support to others myself.

Thanks, JCMK xx

5 Replies
SeasideSusie
SeasideSusieAdministrator

Hi JCMK, welcome to the forum.

First of all, your GP has been very negligent regarding your dose of Levo. Normal protocol is once prescribed then thyroid levels are retested 6 weeks later, increase in Levo of 25mcg, retest after 6 weeks, another increase of 25mcg, retest after 6 weeks, and continue until levels are where they need to be for you to feel well.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.

June results:

TSH 3.94 (0.27 - 4.20)

Free thyroxine 12.6 (12.00 - 22.00)

Free T3 4.08 (3.10 - 6.80)

As you can see, you are very undermedicated and it was right to increase your Levo. However, you haven't mentioned what the results of your follow up test in September were. Do you have these new results? Are you still on 75mcg or was the dose increased again?

Most Hashi's patients benefit enormously from a gluten free diet, so maybe you should trial it for about 6 months. Also, supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Your dire nutrient levels will have been caused by the Hashi's, most likely through the gut/absorption problems that Hashi's causes. See SlowDragon's reply near the bottom of this thread as it has information and links about this

healthunlocked.com/thyroidu...

Question - if I am taking the Vit D fortnightly do I still use Vit K and magnesium daily? (I know it sounds like a daft question but if I don’t need to take them then I don’t want to).

Yes. As you've been reading the forum you will most likely have seen the advice about D3's important cofactors. D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc. So it's imporotant to take Vit K2.

The Vit D Council now recommend a level of 125nmol/L so once you've finished your loading doses you'll need to continue supplementing to reach that level, then once you've achieved it you will need a maintenance dose to keep it there.

If you feel worse taking 20,000iu fortnightly, ask your GP to change your prescription to a lesser amount on a daily basis until your loading doses are complete.

I am now looking to address another of my results but I am unsure which to tackle next B12 Folate, ferritin? and would appreciate some advice on next steps.

Active B12 61.30 (25.10 - 165.00)

It's important that you follow up on this. According to this article viapath.co.uk/our-tests/act... an Active B12 level below 70 should be investigated for B12 deficiency. Do you have any signs of B12 deficiency - check here b12deficiency.info/signs-an...

If so then list them to discuss with your GP and request testing for B12 deficiency/pernicious anaemia.

Folate (serum) 3.37 (2.91 - 50.00)

Once that further testing has been carried out and B12 injections or supplementation started, then you can add a supplement to raise your folate level (not before because it will mask signs of B12 deficiency). If you have B12 injections, or a B12 supplement, then we need a good B complex to balance all the B vitamins. Good ones are Thorne Basic B or Igennus Super B as they contain 400mcg methylfolate.

Ferritin 33.7 (13.0 - 150.00)

You can address this straight away by eating liver regularly, maximum 200g per week. This should raise your ferritin level. Or you could see your GP about iron supplements, but I would want a full blood count and iron panel tested before supplementing iron tablets. If you take iron tablets, take each one with 1000mg Vit C to aid absorption and help prevent constipation, and take 4 hours away from Levo and 2 hours away from any other supplement or medication.

What do others who take their meds at night do before a blood test?

I take my thyroid meds in the early hours of the morning when I wake for the bathroom. When I have thyroid tests, I alter the timing. I know that I will have my test at 8.30am if it's a private test so instead of taking my Levo in the early hours of the morning, I take it at 8.30am the day before and not have my breakfast until an hour later. If you leave any longer you'll get a false low FT4.

JCMK
JCMK in reply to SeasideSusie

Thanks so much for your reply SeasideSusie.

B12 - I will follow up re B12 deficiency/pernicious anaemia testing with the gp. I do get tingling in my hands and feet, GERD (currently have mouth ulcers but I am run down due to this cold) and light headedness at times. I will forward the two links to myself and print off when I am at work on Monday.

Ferritin - I will give the liver a go but I’m not much of a meat eater. I’ve seen you suggest hiding it in other things so I’ll think of something to make and put it in. I’ve also seen liver pate suggested as an alternative so might give that a go first. I may also ask gp for full blood count and iron panel. I can’t see anything on my January results re iron just u&e, serum lipids, and liver function test.

Vit K and magnesium - thanks for the clarification, I’ll restart these. I will also start selenium.

Medication - I am still on 75mcg. It took so long to get my Levo increased because I saw two other doctors following my diagnosis. I didn’t want to see the first doctor again as he seemed quite dismissive and gave me so little info.

The second gp told me levels were fine and that they only measure T4 as it is the active hormone. I decided not to see him again as I had been directed to this forum by a work colleague by then so I knew he didn’t have a clue.

The third gp just kept repeating throughout the consultation that my levels were normal despite me saying I was symptomatic, so I terminated the appointment. I immediately made another appointment and ended up with the original gp. I explained to him that although my TSH was in range I was exhausted all the time I said I felt there was room for an increase in meds. He agreed to increase me to 75mcg. He said he would only go very slowly as he did not want me to become “hyper”.

I have found my September results:-

TSH 0.95 (0.40 - 4.50)

T4 12.6 (7.0 - 17.0)

Serum total 25-OH Vit D level 32.9 (50.0 - 250.0)

It was following this Vit D result that the gp called me and started Vit D supplement. When I asked about my T4 he said he was “happy” with where it is in the range so I doubt he will increase it at this point. As there was more than 24 hours since my last dose of Levothyroxine and testing my T4 might in fact be a little better.

I will start on the B12 testing and ferritin then in 4 weeks do my Medichecks blood test. I can then see if there has been any improvement and check my T3. If my TSH is still under 1 but there is room for it to reduce further, I can propose an increase to the gp as I am still tired most of the time, have joint pain, can’t lose weight, puffy face and eyes etc..

Thanks so much for all this information, this forum makes a real difference.

Best wishes,

JCMK

MissSusan
MissSusan in reply to JCMK

I take desiccated liver tablets to supplement ferritin as I can’t stand eating liver other than in pate.

JCMK
JCMK in reply to MissSusan

Thanks faeriesue, I will look into that as it sounds a more palatable option. Best wishes JCMK

Hi reallyfedup123, I hope you are well and thanks for replying. I will give gluten free a go starting next year. Once I know what I can replace I can plan my meals. Best wishes, JCMK

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