How do you know when you're well: Probably sounds... - Thyroid UK

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How do you know when you're well

hellybaybee profile image
25 Replies

Probably sounds sort of ridiculous, but I'm a bit fed up with the litany of health issues I have. I have hypothyroidism and take ND thyroid after a couple of years on nature throid. I had my dosage dropped slightly as my results kept showing suppression (can't remember exactly what my last results were but tsh was something like 0.03, T3 5.0 (2.6-5.7) and T4 was 11.9 (9-19)) that was 5 months ago... I did have one a bit later which I think showed suppression but haven't got the print out. My weight is still up, I have fissures on my heels and really dry skin, my skin looks sallow and I get spots, I am 5'6 and now a size 14 (the largest I've ever been) from being an 8-10, my nails are ridged and split, I have slight downy hair on my face which I didn't have before... it's not terrible but it's there. I have low b12 and take injections for that, low vitamin d for which I take supplements and have recently had a scan which shows I have cysts, and a fibroid as well as water on my Fallopian tube so it is likely I have endometriosis. I am tired (though nowhere near as badly as I was before b12) and at 34 my quality of life is awful (doesn't help that my money has to go on healthcare which should be offered by the NHS but that's another story - seemingly they don't care about women) and has been for the last 2-3 years. I think I'm starting to get a bit depressed. I suppose my question really surrounds the thyroid results - if they are at a normal or even suppressed level, why am I still symptomatic?

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hellybaybee profile image
hellybaybee
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25 Replies
greygoose profile image
greygoose

Your doctor should not be dosing by the TSH. Once you are on thyroid hormone replacement, the TSH is irrelevant - unless it goes high. It doesn't matter how low it goes. The important number is the FT3, and that wasn't over-range. So, unless you felt hyper, there was no need to reduce your dose.

How much ND thyroid are you taking, now? What are you taking for the low vit D, and how much? Have you had your ferritin tested? Are you taking a B complex with your vit B12 shots?

hellybaybee profile image
hellybaybee in reply to greygoose

I was on 2.5 grain nature throid which has been reduced to 2 grain np thyroid mainly because, in all honesty, the difference between 2 and 2.5 was pretty much unnoticeable, I have HUX d3 20000 iu for vitamin d. I was having it once a week but last vitamin d test came back at 90 something and I was told that it should be over 100 to be effective so I try to take it twice a week. I thought I had my ferritin checked in Jan and it was a little low but I can't find it so maybe not 🤔 I'll try and attach my Jan results because that was the most comprehensive. I don't take a b12 complex, my injections are methylcobalamin - have to self inject and went through a charity because gp wouldn't prescribe. It's definitely thyroid related, I eat all the things that give you b12

hellybaybee profile image
hellybaybee in reply to hellybaybee

I can't seem to do it... my folate was on the low side 3.4 (3.10-20.05)

greygoose profile image
greygoose in reply to hellybaybee

OK, well, all the Bs work together, so need to be kept balanced. If you find a B complex with at least 400 mcg methylfolate, that will bring your folate up nicely. :)

With the vit D3, you should be taking some vit K2-MK7, because taking D3 increases your absorption of calcium from food, and the K2 makes sure it gets into the bones and teeth, rather than hanging around in the soft tissues. You should also take magnesium, when you take D3, because they work together. :)

hellybaybee profile image
hellybaybee in reply to greygoose

Thanks that's really helpful, I'll give it a try 👍🏻

greygoose profile image
greygoose in reply to hellybaybee

You're welcome. :)

LaShell profile image
LaShell in reply to greygoose

How much Magnesium should you start out with ?

greygoose profile image
greygoose in reply to LaShell

About 200 mg, perhaps.

LaShell profile image
LaShell in reply to greygoose

Per day, or twice a day ?

(I have a bottle of 400mg chewables)

and thank you so much for your help.

greygoose profile image
greygoose in reply to LaShell

Once a day. :)

shaws profile image
shawsAdministrator

Blood test results cannot inform anyone (Dr or ourselves) how well we are.

We know ourselves by how we 'feel' and if we are energetic with no clinical symptoms that's what I'd call 'optimum' dose and hormones that suit. Your T4 was 11.9 (9-19) so that is low so I don't know how you can convert T4 to an optimum T3. It is T3 which drives our metabolism.

Did you have your blood test at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test? This allows the TSH to be at its highest as that is all the doctors take notice of. They seem to be unaware how thyroid hormones function in our body.

web.archive.org/web/2010103...

hellybaybee profile image
hellybaybee in reply to shaws

Hi yes, I always do this but not on levo on Ndt... I don't think I convert T4 well at all when on levo I feel much worse

shaws profile image
shawsAdministrator in reply to hellybaybee

You are taking NDT but is the dose optimum? If you read the link above there is good advice on how to get well. This doctor only took a blood test for the initial diagnosis and thereafter it was on how the patient felt on gradual increases until symptom-free. He would never prescribe levo but only NDT or T3 only for thyroid resistant patients. The following may be helpful:

web.archive.org/web/2010112...

hellybaybee profile image
hellybaybee in reply to shaws

Thanks, I will read this

Lottie08 profile image
Lottie08 in reply to shaws

Hi i notice youve mentioned when to have your blood test done!? So i take my thyroxine at 5.45 each morning? So when do i go for my blood test? Thanks

shaws profile image
shawsAdministrator in reply to Lottie08

You miss this dose and take after blood test which is a fasting one but you can drink water. That's why advice is for the earliest possible test. :)

Lottie08 profile image
Lottie08 in reply to shaws

Ok so ill go at 9am for my blood test, but then wait 2 hours still to eat and drink?

shaws profile image
shawsAdministrator in reply to Lottie08

No. Take dose and wait an hour before you eat.

Lottie08 profile image
Lottie08 in reply to shaws

Ha ha ok, I'll be starving by then! Thanks for letting me know why don't the consultants tell you that?

shaws profile image
shawsAdministrator in reply to Lottie08

Simple. They don't know :)

shaws profile image
shawsAdministrator in reply to Lottie08

You should always take levo with one full glass of water. If not the tablet may swell in your throat,

Lottie08 profile image
Lottie08 in reply to shaws

Yeah i take it with a big glass of water 2 hours before food and drink 😊

jamesal0 profile image
jamesal0

Get your Testosterone, Oestrogen, Progesterone, B12 checked. Supplement if not upper pecentiles. Also ignore TSH with NDT you need to dose on symptoms. I'm 190 pounds/88kg and take 3 to 3.5 grains NDT perday. I run a TSH of 4.0 and feel fine. My peturaty gland is probably broken.

hellybaybee profile image
hellybaybee in reply to jamesal0

B12 is low, not dietary related, now taking b12 shots which do help... oestrogen could be out of whack given other health problems but I will look into this, thanks

Just a few thoughts:

I wonder if the ratio fT4 to fT3 is off: your fT3 is so high in comparison to fT4.

That high fT3 could also be suppressing your TSH.

Any way you could up your dose of T4 and lower the T3?

Is your B12 level better now?

How is your ferritin? It made an enormous difference for me when I took iron bis-glycenate and got my ferritin from 26 up to 90. It affected my skin, hair, eyes, level of energy, mood, cognitive ability etc . I was advised we need ferritin between 70 and 150.

I hope you feel better soon.

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