Another push....what do you think?

[Mandy2007]

Hi Guys, I’m off to see my GP on Friday with my latest NHS & private, blood results which both show a low TSH and low FT3, both under range. My private test also shows high anti-bodies and low Vit D, Folate, Ferritin & B12.

Also, my throat feels swollen/like it has a lump in it, not just when I swallow but all the time, causing nighttime breathing to be somewhat compromised, which is worrying me. Oddly you can’t see anything externally (not that I can see). I do have a private neck scan booked in for Saturday.

I wanted to ask you kind people what your thoughts are on my best way to approach my GP to get the best outcome. This is my third GP in seek of help in just under a year. First GP did request an endo referral which was declined.

Background - age 50, hypo since age 27, Levo the whole time (dose now 100mg), not been well on & off for years, I think worse since onset of menopause. I am of course prepared to go private, but in an ideal world the “system” will take responsibility and help manage me back to optimum health. I’m going to certainly try (again) now that I have THEIR latest blood results showing low FT3 as well as low TSH (both under range). I clearly do not convert well enough.

Your feedback and thoughts will be really helpful to me. Thank you 👍

[greygoose]

It's comparing FT4 and FT3 that shows how well you convert. Nothing to do with TSH, which is more or less irrelevant. Do you have an FT4 result? Why not post your results here, with ranges, and let's have a look.

[Mandy2007]

FT4 15.6 (7.7-20.6)

FT3 3.9 (4.2-6.9)

TSH 0.10 (0.3-4.8)

[greygoose in reply to Mandy2007]

Your FT4 is over mid-range, but your FT3 is below range. So, yes, you do have a conversion problem. And that's why you haven't felt well. You could increase your levo a bit, but it won't make much difference. So, what you need is T3 added to your levo. Very, very doubtful that your doctor will prescribe it. Have you considered buying your own?

[Mandy2007 in reply to greygoose]

Hi, yes I have considered buying my own, and no doubt that’s exactly what I will do. I am beginning to realise that my expectations of the “system” are delusional. I think tomorrow, if the GP is digging her heels in around the T3, I will ask that if I get it myself elsewhere, would she be prepared to agree more regular blood tests so that I/we can keep a track on my levels.

I wonder whether Thyroid UK have ever tried “lobbying” Government to look at changing the rules over Thyroid Treatment?

[Chippysue in reply to Mandy2007]

The thyroid petition in Scotland by lorraine cleaver has been going on for 6 years I think. My ex MP carline Spellman discussed thyroid treatment issues in parliament and the group ITT are campaigning too.

I will not be guided by gp’s as they don’t know enough about thyroid disease. They just treat by the TSH, which is showing what the pituitary gland is doing. They get twitchy about B12 and vitamin d too. They are incentivised to prescribe anti-depressants, statins and flu jabs - it’s shameful.

So I buy my own NDT, B12, vit D, vit c, selenium, folate, b vits, omega 3, magnesium, and pay for thermography scans and regular Chiropractor adjustments. I have my purified Levo on a quarterly prescription I order online so don’t need to see a gp - they are bad for my health! and boy do I feel well without them.

[Howard39 in reply to Chippysue]

Yes great answers- good luck getting t3!!

I am with chippysue sadly I buy the majority of my meds and swapping to ndt and a new adrenal supplement was the best thing I ever did.

I also pay for thermal imaging and chiropractor treatments. I do get the needles for the b12 and mag sulphate injections on the nhs. But I stay away if I can help it. There’s no point speaking to someone who is less informed- unless you live it you cannot understand!!

Sinus issues were definitely additive related.

Good luck with the scan and definitely add in t3 or swap to ndt. I just hope you don’t get a numpty at the doctors who looks at your low tsh- which is meaningless, and tries to lower your thyroxine. Be prepared just in case.

[Hidden in reply to Chippysue]

How do you get a quarterly prescription? From your GP or private endorsed?

[Chippysue in reply to Hidden]

well spotted Marion - they are tubs of 100 capsules

[Mandy2007 in reply to greygoose]

Hi the GP has put my Levo up to 125mcg. She would not hear about my T3 being low and talked over me and was adamant that they will not be prescribing me any T3, despite my last two blood results showing low T3.

I say last two, they are the only two that have included T3 (one private & one NHS on my insistence), lord knows how long my T3 has been low?! The GP said that by increasing my Levo, it will increase my T3.

I had my Levo increased 6 months ago, and it didn’t increase my T3.

My TSH is 0.10 LOW. She said she will refer me to an Endo and is happy for me to find one to put forward. I asked that if I paid for T3 would she do more regular blood tests including T3 so that I/we can keep an eye on it....she said yes to that.

What are your thoughts? Thank you.

[greygoose in reply to Mandy2007]

Yes, well, she doesn't know very much about thyroid, does she. In theory, increasing your T4 should increase your T3, but it depends how well you convert, and you just don't convert well enough. If she knew anything about it, she would be able to see that from your results. Increasing by 25 mcg just isn't going to increase your FT3 enough to make you well, but increasing by more than 25 mcg will probably make your FT4 so high that your conversion will decrease, because more will be converted to rT3.

So, you need to chose your endo carefully. If you find one that sounds promising, post on here and ask if anyone has any experience of him.

It doesn't matter about your TSH. There's not much you can do about it, anyway.

[Chippysue]

Many thanks for your private message, I have just sent a lengthy reply.

You CAN and WILL get better!