High TSH on high NDT dose

[SunshineSaff]

Hey, I'm feeling so confused. Any advice appreciated!

I have used Thyrogold (NDT) to successfully treat my underactive thyroid (Hypothyroid with Hashimotos) for the last few years.

Occasionally my dose needs altering slightly but generally it has remained stable on this medication.

I am currently taking an alternating dose of 600mg one day and 450mg the next. (600mg a day being max dose).

But my blood results this week were: FT3 = 2.9. FT4 = 6.4 TSH = 63.8.

I am feeling symptomatic - so fatigued, exhausted, depressed, tight chest, anxiety and panic symptoms. So I was expecting to need to increase my dose.

But I have not seen my TSH this high since before I was diagnosed I think? (Approx. 9 years ago).

Is it normal to have such a high TSH when on a high dose of thyroid medication?

Is something else going on?

Tempted to go back to gp for help but they're generally not helpful when it comes to my thyroid problems and nor is the NHS endo.. considering going private for advice..

Thought I'd see if anyone has any ideas first.

Thank you

Saffron

[GlowCoach Administrator]

Thyrogold is a food supplement. Their website states: "we are required to inform you that there is no intention, implied or otherwise that represents or infers that this product be used in the cure, mitigation, treatment, or prevention of any disease. "

I would suggest that you start looking at a Levo + T3 combination so that you know what is in your replacement hormone medicine.

[tattybogle in reply to GlowCoach]

Thyrogold is John Lowe's brand (now run by his wife Tammy after his untimely death) .

SunshineSaff have you contacted Tammy Lowe to let her know you have had these odd results ? i'm sure she'd be keen to know .

Thyro-Gold™ does not require a prescription because we maintain its valued designation as a dietary supplement. To prevent our product from being classified as a drug under Section 201(g) of the Federal Food, Drug and Cosmetic Act, we are required to inform you that there is no intention, implied or otherwise that represents or infers that this product be used in the cure, mitigation, treatment, or prevention of any disease".

see the answer given here re what it contains :

naturalthyroidsolutions.com...

Q: Has Thyro-Gold™ been chemically "stripped" of T4 and T3 in the same manner as other so-called "dietary" thyroid supplements? Or is it pure, unadulterated bovine thyroid that contains naturally occurring T4,T3,T2,T1 hormones?

A : Dr Lowe , ThyroGold contains ....

[SunshineSaff in reply to tattybogle]

Thanks Tatty, yes I have emailed Tammy today to see if there's anything she can advise.

[SunshineSaff in reply to GlowCoach]

Thanks Jaydee but as I said - Thyrogold has successfully treated my condition for years - T3, T4 and TSH all within range until now.

[GlowCoach Administrator in reply to SunshineSaff]

I'd be quite alarmed if they were my results. Suggest you contact the company and ask if anything has changed.

[SlowDragon Administrator]

FT3 = 2.9.

FT4 = 6.4

TSH = 63.8.

Even without ranges we can see…..These results show you are extremely hypothyroid

Have you got any levothyroxine you can start taking now

Starting on at least 50mcg …..or perhaps higher dose

What dose levothyroxine did you use to take?

What you are taking is clearly not working for you

you also need to test vitamin D, folate, B12 and ferritin levels now or at next test

What vitamin supplements are you currently taking

Retest thyroid levels 6-8 weeks after being on constant unchanging dose and brand levothyroxine

[SunshineSaff in reply to SlowDragon]

Why would it work for years, and stop working now? Levothyroxine was not fully treating my symptoms.

I'm happy to check those extra blood levels, but can I just check, could that be effecting my medication from working properly?

Thank you.

[Framboise]

Are the capsules of Thyro-Gold which you're currently taking filled a fully as they usually are? I remember that being an issue a few years ago and everyone who had them was sent replacements.

[SunshineSaff in reply to Framboise]

I think they were, what do you mean? Like a batch was sent out incorrectly or something?

[Framboise in reply to SunshineSaff]

I remember that one batch, or possibly more than one, hadn't been filled up correctly, so the capsules contained very little of the actual mix. You should be able to see how full they are through the capsule.

[SunshineSaff in reply to Framboise]

I've compared them with the new bottle I've recently ordered and they appear the same and look as full as eachother, no obvious lack of contents 😓 Thank you for the info.

[Hidden]

SunshineSaff I’m so sorry you’re feeling so ill but these labs certainly explain why! My close friend was on thyrogold and while she was well for a while she eventually also went very downhill, she is now on synthetics. I have sent her your post and hope she can give you some insight x

[SunshineSaff in reply to Hidden]

Thank you so much I really appreciate this. If she's in the UK and takes any T3 treatment I would desperately like to know more. X

[Beau55]

SunshineSaff I had this same issue although my results were not as remarkable as yours! After 2 good years on thyrogold and feeling great something changed after they reformulated. I started to go down hill slowly but I didn’t even realise it until it was too late. I dosed by symptoms so I don’t know what my bloods were during my good years. I also ended up feeling completely toxic as if it was just building in my system without being used (perhaps cortisol).

I did try to contact Tammy a few times but got no luck or contact back from her. I have heard of others who have also gone down hill on thyrogold so I fear it’s now lost all of its potency… I do suggest that it’s flogging a dying horse trying to resolve your issues now using TG and I would look at proper prescription meds.

Do you have a doctor willing to prescribe armour if you have done well on NDT before?

[SunshineSaff in reply to Beau55]

Thank you. I havent heard back rmfrom Tammy yet and I'm starting to think I need to switch medication.

Hoping I can find somewhere to supply Armour, otherwise I may need to go through the process of getting back on Levothyroxine and trying to find a private endo who will prescribe T3.

The NHS endo I saw before was so patronising and rude and kept talking over me. I really don't want to see him again.

I'm feeling so unwell I'm desperate to get on a new medication ASAP 😓

[waveylines]

Glad you have contacted them. Sounds like a faulty batch/es. Hopefully she will answer as a matter of urgency. You're alternative is to switch NDT. I'm on Armour.

[SunshineSaff in reply to waveylines]

I would love to try Armour if I can find where to buy it from! Otherwise I think im going to have to try and contact my gp in the next few days and get back on Levothyroxine, which will not fully treat my symptoms 😭

[BB001 in reply to SunshineSaff]

Why don't you try and get T3 prescribed on NHS

[BB001]

I wonder if there's some reason why the current bottle of Thyro-Gold isn't working?

Have you started a new bottle of Thyro-Gold? Has it been stored correctly? Not got too hot or damp?

[Strongerme23]

The same just happened to me. My labs improved dramatically on Thyrogold from the beginning of this year, and I felt great. Life was good for 6 months.

But, a month ago, on the latest shipment, I started going downhill fast. Fatigue, need afternoon naps, itching, allergies, weight gain. Ran a lab. Yep, TSH had spiked to 150, and all numbers for T3, T4 etc were down.

It had stopped working. I upped my dose from 450 mcg to 600 to 800 mcg per day. Slight improvement, but slight is all. This is always the problem with NDT - they work, until they don't. You get a batch that's way lower in T4 and T3, and you feel it pretty quickly. I am looking at Armour and another Bovine brand to see if it works better. This is about the 5th time I've switched around on NDT. Even the compounded stuff stopped working. I can't do Levo - the synthetics give me panic attacks and anxiety and don't fix my other symptoms. I'm stuck on NDT, but I sure wish I could find a reliably good source.