Follow-up to yesterday's post (linked) - Dr app... - Thyroid UK

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Follow-up to yesterday's post (linked) - Dr appt and not HypoTh?

DumbBlonde profile image
8 Replies

Sorry - I don't seem able to edit the original post (time limit?) to update but hopefully this is the link:

healthunlocked.com/thyroidu.......

So, before I got the BH results, I had been able to get an appt. with Dr I have seen " a lot" since the end of last year, as I said; this was mainly due to my fears about diabetes but the BH test results came by email, so I was thankfully able to have the chance to mention them to him (as advised by BH re. the CRP)

He pretty much dismissed the CRP being elevated, also the previous Transferrin Saturation Level (low) as not a concern (chuckled slightly when I told him that I had printed an article out form a University study, but forgotten it....) - when both of these things are forewarning (and CRP is both a cause and a consequence of possible) cardiac problems (esp. as I am pretty much anemic and not able to tolerate ferrous anything....). He said that the HbA1c test could be done to look for diabetes (which I really should not have - based on lifestyle.....), but the tingling and burning is something he has (of course; I am unique, don't you know) never EVER heard of.....

As for the TSH having risen by 1.0 in a about 2 months, he said that any kind of trial of medication might cause me even more problems.

All of which leaves me just about where I have always been - without support and yet another note about being a hypochondriac and suffering from a mental illness (but nothing physical) on my record.

BUT - apart from this whinge, that is my main question for clever people who might read this post: IF TSH is high-ish (and I keep reading that <1.0 is ideal and one will not feel well if it is over 2.0) at 3.67, what am I to do - in light of the T4 and T3 being what they are (14.7 and 5.8)?

Is this TSH level of no relevance then? I am so confused (especially in light of all the physical external and less obvious stuff, which was, as usual, disregarded.

*folds arms and pulls sulky face*

Any help is welcome........ xx

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DumbBlonde
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HarryE profile image
HarryE

Looking at your results, you need to be doing something about your B12 & folate - both need to be much higher. B12 deficiency can cause tingling & pins & needles.

My TSH never got above 4 & I was desperately unwell - I was forced into self medicating. So it depends how long you want to spend arguing with doctors who don't care really.

DumbBlonde profile image
DumbBlonde in reply to HarryE

Thank you HarryE........ The tingling/burning has mainly only happened after eating something sugary (bourbon biscuits - my only weakness..... although I am sure the Dr thought I was doing a Cadbury's factory tour and stuffing myself on a daily basis). I ate nothing of the sort yesterday and did not have it happen, although I am sure there could be other triggers too (especially certain "area"s, shall we say).

I asked for help last year about the peripheral neuropathy-type of pins and needles and was "diagnosed" with - of course - Carpal Tunnel Syndrome.

But I see that I DO need to take some B12 and have it on order from Amazon now :o) I just struggle with almost all supplements as I know that they need real food to be metabolised properly - and food is my big big issue. (Although I have also been sneered at ("really?" "you think?" - plus side -eye given nowadays, although I never asked for help when I weighed about 54kg so that period of time is not on record)when I mentioned anorexia - which I have suffered from a form of for most of my adult life. I have - as I told him yesterday - now cut out just about all food groups (having started years ago with meat) and if I could live on supplements, I would.....

As for TSH - this is my my (other) main worry now, if the T4/T3 are acceptable, what would I be doing if I took any thyroid medication (unofficially ------ of course); when you were so ill and with a TSH never over 4, what else was going off (esp.with T4 and T3) - and how did you help yourself?

xx

HarryE profile image
HarryE in reply to DumbBlonde

My FT4 & FT3 didn't get out of range either, but my antibodies were massively over range. In most other countries they would treat at 4, but the barbaric BTA insist on 10 - I would have been dead by then. I bought my own NDT.

If you get the sublingual B12 it absorbs through your mouth, rather than your gut. But do get some methlyfolate too - they work together

DumbBlonde profile image
DumbBlonde in reply to HarryE

Yes, I have got the methylcobalamin (?) version, 1000mcg :o)

I still wonder if taking NDT is the right thing; I did think though that T4 needed to be in top quarter of range which mine is not and of course the rising TSH must be an indicator of a problem - existing (alongside the blatant - but ignored - symptoms) or upcoming - which I want to alleviate/prevent.

x

HarryE profile image
HarryE in reply to DumbBlonde

That's a decision only you can make. But living on supplements is not a good plan for long term health!

Methylcobalamin is B12 - methylfolate is the best form of folate.

DumbBlonde profile image
DumbBlonde in reply to HarryE

I am saying this wrongly, I think..... :o)

I was all set to take T3 or NDT, believing I am hypoTh - but am thrown by the TSH being high (well, over the <1.0 that is best) and feeling that yes, there IS a problem - but also being advised that the T4 is acceptable. Am I going to be able to help myself with self-medicating, that's my question....?

Or is there no need - and what am I aiming for by taking it?

xx

HarryE profile image
HarryE in reply to DumbBlonde

My view (and it is only my personal view) is that your thyroid is struggling to keep those levels up, as evidenced by the TSH and it will eventually not be able to keep it going. There is something inflammatory going on looking at your CRP, despite the fact that your thyroid antibodies appear negative.

Addressing your B12 & folate may help with symptoms at the moment. And your ferritin could be a tad higher - optimal is 70-90.

In the long run my guess would be you will need treatment - so it's back to how much you are prepared to tolerate. How unwell do you feel?

DumbBlonde profile image
DumbBlonde in reply to HarryE

Thank you HarryE :o)

To quote myself when speaking to the Dr, I feel as though I am " a dead woman walking" - and look as though I could play a part on the Walking Dead - without make-up required. I asked him a few months ago, (as someone who always "looked well") - it is one thing to be unwell and look well, but how often do you see someone who "looks ill and IS well? I do not think that that can often occur...... He labelled me (on my notes) as "admitting to being vain", when there is so much more than that.

I thought the CRP was an issue (and BH noted it s something to ask GP about) but he said they only worry about it "in children"; he of course scoffed at what I told him I had read (re.inflammation and CV problems....) - no surprise, but where does that leave me, I wonder..... :o/

I have all (or most anyway) of the symptoms of hypothyroidism but I know that my nutritional "self-harm" must play a part - but I have almost gone beyond "being able" to eat, so it is in part I am sure, a chicken and egg situation.

I of course have all the typical issues - terrible weight gain that I cannot lose, dry skin (now showing signs of severe lack of vitamin C), grey-ish yellow skin with not an ounce of moisture, hair that has lost it's colour (not gone grey but showing strands) with each hair being so weak,I have no idea how the ones that remain stay there..... I am out of breath at the least exertion which has of course been diagnosed as asthma - but all I know is, I set off to walk (running? cycling? - no chance; and yet I looked after 33 horses every day a few years ago) and just want to cry. I tried the inhalers and convinced myself that they cause some kind of swelling (not bloating as such) but that still happens whatever I do or don't do...... My blood pressure was rising (using my own machine), so I stopped taking it (yes, I have good sense), cholesterol levels too (with no dietary cause) and I always have a basal temperature of 35 - 36 degrees maximum.

I have zero energy and my brain is shutting down; this is such an urgent worry for me as I am on my last chance with the Open University and cannot absorb the material for an upcoming exam. Between the problems of trying to get help and actually feeling so bad, I feel that there is no hope.

[It goes without saying that I am depressed - and the Drs at least agree with that, ho hum.]

If taking the thyroid hormones will be helpful, then I am all for it - but the OK T3 confused me (alongside the higher TSH) :o/

xx

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