Shocked by BH test results...advice please.

[Shonnyuk]

Hi... I've been self mediating with ndt (thyroid s) since Oct last year and have felt loads better. Although I am tired and have joint pain still.

I had low ferritin a while back and so supplement 3 x 200mg ferrous sulphate. Looks like I've really over done it! 

I also supplement Jarrow b12 5000 mg, omega  3 1000mg, vit d3 5000, selenium 200mg, zinc 15mg, evening primrose 1000mg and tamoxifen 20mg which is due to cancer twice in the last 7 years.

I'm 43 and I must admit. .  I'm a bit worried about what I've done to myself here.

My advice I would gratefully receive.

[Shonnyuk]

Many thanks for your reply.

The Dr's comments suggested lowering Thyroxine.  Which of course, I don't take. 

I'm really lost here as T4 is so low.

I'm also concerned at the iron, which as of today, supplements will head in the bin! 

[Clutter in reply to Shonnyuk]

Shonnyuk,

The advice to lower dose will be because TSH is suppressed.  Ignore it, you're not overmedicated because FT4 and FT3 are not over range.  FT4 is often low when taking NDT or T4+T3 but your FT3 is low in range too, so increasing dose by 1/2 to 1 grain will raise both.

Stop taking the iron supplement but don't bin them.  If ferritin drops <70 when you stop supplementing you may need one tablet daily maintenance dose in the future.  You won't have done yourself any harm by over medicating for a few months.

B12 is optimal around 1,000.  You might consider supplementing 1,000mcg methylcobalamin and a B Complex vitamin.

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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Shonnyuk in reply to Clutter]

Thank you so much for putting my mind at rest. I really appreciate it. 

[SeasideSusie Remembering]

Shonnyuk  Did your GP originally prescribe the ferrous sulphate for your low ferritin? If so, does he not keep an eye on your level? I think you are right to ditch them but wonder if you should show these results to him if he did prescribe in the first place.

Does your GP know about you self medicating? He probably wont understand your TFT results unless he embraces NDT, I'm unsure as I don't use NDT so can't really comment.

You need to get your B12 up to about 900-1000.

What about your antibodies? Are you gluten free? Going gluten free will help dampen down the antibody attacks, some people also need to be dairy free.

It might be an idea to do a Vit D test, mine went up very quickly so I reduced my dose to 5 days a week as a maintenance dose and that keeps it at a good level. As it's a fat soluble Vitamin it gets stored in your body, rather than any excess being excreted like water soluble vits such as the Bs and C, so you don't want to overdo it.

[helvella in reply to SeasideSusie]

We see a number of people stop iron supplementation only to become deficient again in a few months.

Clearly ferritin is very high. But don't just stop and ignore it. Talk to doctor, maybe pause and get re-tested. It is possible that, long-term, you might need a modest iron supplementation.

[Shonnyuk]

Hi ... thank you for your reply.  

My Dr didn't pescribe them. I took them initially as my hair was falling out all over the place. Which has now ceased. 

My Dr does not know I am on NDT as to be honest, they have been pretty useless. I'm still waiting on a call regarding their own blood tests a month ago. 

I am taking b12 5000mg, I guess I can double this without too much problem.

Any NDT peeps help me out with the dose? I thought. .. happy to be wrong..that just T3 was the important result. Which is mid way.

My t4 is lower now than when I was diagnosed :/ 

[adin in reply to Shonnyuk]

T4 is lower because in ndt proportion of T4 and T3 (made by pig thyroid)  is different to that of humans(4:1 not 10:1). In pig thyroid the T4 It is less than in the humans .

[Shonnyuk in reply to adin]

Ah OK... thanks. So I am on 2 grains atm, looking at these results should I stick at 2? Or lower and add thyroxine? Many thanks 

[adin in reply to Shonnyuk]

I do not know what to say, some people do well when add T4 (some no) some when add T3, you need to try...but of course you need to have good levels of B12 and D3 vits.

[Shonnyuk in reply to adin]

Thank you 

Looking at my results overall... I actually think I might try an increase in NDT which should at least get my t4 in range and up my t3 which is mid range. If that doesn't work.. I may get some thyroxine thrown in.

I never expected it to be so confusing!  

[SeasideSusie Remembering in reply to Shonnyuk]

Shonnyuk  If it was me I would leave the B12 at 5000, it should build up in time if you continue, doubling to 10,000 seems rather a lot, although you can't overdose as you'd pee the excess out but it would be a waste of money.

See what your ferritin level is on re-testing and then you'll probably need a modest maintenance dose as helvella says. The hair loss might not have been connected to low ferritin, it could be due to your hypo as it's a common sign, and as you are Hashi's you can swing from hypo to hyper due to the antibody attacks.

I'd still suggest testing Vit D, you can do this for £28 through City Assays, just a quick blood spot test.

If your surgery hasn't contacted you yet regarding blood tests they had carried out, my guess is they have come back, been considered 'normal' and filed. Chase them up and get a print out of them.

[Shonnyuk in reply to SeasideSusie]

Hi... they left a message on my answerphone several weeks ago saying they wanted to lower my mess as tsh was low (that's all they tested). I've rung back several times and I am told that the Dr is still working through her call back list.

I will test the vit d. Thanks.

I've been on b12 5000mg for approx 6 months. It was at 180 before self supplementing 

[SeasideSusie Remembering in reply to Shonnyuk]

Shonnyuk  

*I've rung back several times and I am told that the Dr is still working through her call back list.*

Jeez, they're taking their time. It sounds as though the doctor has forgotten. Nothing surprises me any more about doctors!

[Shonnyuk]

Hi... I plan on retesting via BH after stopping iron for a couple of months. Very impressed with their service! 

[SilverAvocado]

ShonnyUK, when you're on NDT the T4 tests aren't very meaningful - they're designed for people on T4 mono therapy. On NDT you can expect T4 to be lower, but it doesn't matter, as T4 isn't used directly but the body, its just a stepping stone to T3. So fT3 is the most important number, you want it to be in the top third of the range. So yours is far too low. 

Are you also monitoring temperature, pulse and maybe bp? These are a big help when your self medicating. 

[Shonnyuk]

Thank you. I do feel undermedicated because of joint pain. Particularly ankle pain and fatigue.  

I test my pulse with a phone app (someone recommended it on here) and resting pulse is around 75. Which I thought was a little high. My morning (before getting out of bed) temp tends to be around 36.5. Which I thought was about right?