So confused by results - should I give up?

[cupcakegirl]

Have posted several times before, but I’m really at the end of my tether.

I’ve been having symptoms of hypothyroidism for 11 years but tests results were always normal (TSH generally 1.3-1.7). Since september I’ve decided to do private tests and in the last couple of months I’ve done them more frequently - my symptoms are up and down so I thought my levels might be too.

A month ago I had my first higher TSH reading: 5.95 - I did go to the doctors and they said it’s not high enough, retest in 3 months (which they’ve booked in). I was surprised it was so much higher in such a short space of time so I retested and it was back in the 1s. Retested again on Monday as I’d had four days of feeling like absolute death and it’s now 3.72, so high but low enough that the doctors would completely dismiss it. My TPO antibodies are strange 16, then up to 22.4, now back down to 13.

I’m booked in for a wide range of tests in August via the GP and they are including antibodies at my request. It’s a complete lottery what the results will be on that day.

I’m starting to feel like a trial of self medicating is my only option here, depending on those results in August. Any other suggestions? Otherwise it’s just give up on this and accept that im going to feel awful, but now I have children and I need to be well for them.

I’m on vit D and folate and my levels are going up so that’s good.

[humanbean]

No, you shouldn't give up. You are obviously hypo already or are heading towards being hypo at some speed.

The number of antibodies you have is low, but numbers do fluctuate, and you might be unlucky and just never have caught them with a blood test. Some people never do, despite scans showing that they have damage consistent with Hashi's (autoimmune thyroid disease).

Since your thyroid results are fluctuating so much, are you testing at the same time of day (before 9am) every time, having fasted overnight?

In an ideal world your doctor might treat you now, because it would hopefully damp down the fluctuations in your thyroid results. Since that won't happen, you could treat yourself. But it would be best to hang on for an official diagnosis. If you treat yourself your hypothyroidism will never be recognised by the NHS.

For optimal levels of nutrients you will need to aim for the following results :

Vitamin D : 100 - 150

Folate : Mid-range up to top of range i.e. approx 26 - 50

Vitamin B12 : Might be fine. Personally I prefer mine to be top of range or even a bit over.

Ferritin : Many people with low ferritin will have low(ish) serum iron and transferrin saturation, possibly low haemoglobin as well. If that is the case then supplementation is a good idea. If people have the combo of low(ish) ferritin and high serum iron and high transferrin saturation then iron supplements should be avoided until the problem is dealt with. For info on high iron, read this :

stopthethyroidmadness.com/h...

[cupcakegirl in reply to humanbean]

Thanks so much. I just feel like I’m going crazy. I wish I could afford to test even more often as I have a feeling they’re up and down constantly. Two of these were free retests because my numbers were so variable I thought it must be wrong, and the companies agreed to retested me for free. At least I know now that they really are variable. Now kicking myself for waiting until day 4 of feeling like death to do the test since I started feeling better that day. Think I’m going to order another kit so that it’s there and waiting for a bad spell.

My plan is to do my own test a week before the nhs test so I have a better chance of catching an up on one of them, and maybe I can demonstrate how quickly they’re fluctuating... although my doctor says that fluctuating levels aren’t a problem unless they’re out of normal range.

I really don’t want to self medicate, I’ve been holding off for ages - I want a proper diagnosis but even then I know it doesn’t mean proper treatment. I’ve just had enough. I’m working on the vitamin levels now, wanted to wait and see how the b12 came out when the doctor ran tests but I’m already on folate and vit D so yeah, we shall see.

[cupcakegirl in reply to cupcakegirl]

Forgot to add, all bar the first of these tests were done first thing in the morning and fasting

[humanbean in reply to cupcakegirl]

my doctor says that fluctuating levels aren’t a problem unless they’re out of normal range.

He/she clearly doesn't have a clue what it is like to have fluctuating thyroid hormone levels. It is a problem if they fluctuate because it makes life very miserable for the patient!

[cupcakegirl in reply to humanbean]

Agreed. I have 21 month old twin boys and most weeks we are lucky to get out of the house once. It’s not fair to them at all. It was bad enough being housebound when I didn’t have kids, but they deserve better honestly. So I guess I just have to wait for their tests and then take everything in and argue my case.

Then if that doesn’t work I’ll find the money to see a specialist privately and if I still get no joy I’ll look into self medicating as I can’t go on like this much longer.

Just need to figure out how best to present my case. My GP is sympathetic and even at one point consulted with an endocrinologist to see if he could trial me on Levo - the consultant said no, and “everyone would feel better on levo and we can’t give it to everyone”. FFS.

[humanbean in reply to cupcakegirl]

I've read that "everyone would feel better on Levo" rubbish before.

Assuming the consultant is not hypothyroid, he/she should try Levo and see how they feel being hyperthyroid! If it was so wonderful why does anyone who is hyperthyroid ever seek treatment?

[Hidden in reply to cupcakegirl]

That's a dismissive, uncaring response if I ever heard one and the logic is not much better! "Everyone would feel better on levo..." No. They wouldn't.

[cupcakegirl in reply to Hidden]

Exactly irina - my first thought was thank god I didn’t push for a referral and end up seeing that clueless numpty. It’s scary when consultants know so little about a condition that falls within their specialty - I saw the same with gynaes before I was diagnosed with endo and I’m seeing the same now: even finding a recommendation for an endocrinologist who knows their thyroid stuff is difficult!

[Hidden in reply to cupcakegirl]

I agree. Thank God we can educate ourselves with the internet. When I see a doctor who is threatened by that I know he/she is not for me. And I tell them why I won't be back. Letters after a name doesn't guarantee the brain is in gear and no letters doesn't indicate ignorance. I've said this before. It's a comment my late brother first mentioned re doctors. "Someone had to graduate last in their class."

[Beachytoes2u in reply to Hidden]

I'm reading this as cuz it's got good info, then the last line, I busted out laughing, last in class, no lie

[cupcakegirl]

Does anyone have any information on what’s “normal” in terms of variation in a healthy thyroid? It just seems that it shouldn’t vary this much.

[SlowDragon Administrator]

Would suggest you also improve both ferritin and B12

To improve B12 try adding a good quality vitamin B complex daily. One with folate in not folic acid. Eg Igennus Super B complex

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Ask GP to run full iron panel to test iron levels. Iron is likely low if ferritin is low, but it does need testing first.

To improve ferritin eating liver or liver pate one a week, or red meat should all help

Improving your vitamins should help increase Thyroid use. This may either just make you feel better, or push TSH up so you can get treated

Selenium supplements can help improve conversion of FT4 to FT3

Good daily vitamin C to help support adrenals may help too

Vitamin D needs to improve to around 100nmol. Vitamin D mouth spray works well as avoids poor gut function

Also important to look at magnesium and vitamin K2 Mk7 if taking high dose vitamin D

articles.mercola.com/sites/...

[cupcakegirl in reply to SlowDragon]

Thanks so much, will definitely look into this. I want to start taking things now but wondering if I should wait for after the blood tests the GP is doing in August.

[SlowDragon Administrator in reply to cupcakegirl]

You can look at adding anything apart from B vitamins. B12 takes weeks/months to fall to base levels if have been supplementing.

Iron supplements should be stopped a week before testing

Vitamin C, magnesium,selenium and vitamin K2 are not a problem

Vitamin D, just stop day before testing

[DaisyBelle85 in reply to SlowDragon]

I've recently started taking Vitamin D oral spray which provides a 3000 IU dose daily and have noticed it makes my tongue feel tingly (although I do suffer from neuropathies in my hand and foot, this has only started since I've commenced the vitD) should I be adding the magnesium and k2?

[SlowDragon Administrator in reply to DaisyBelle85]

Peripheral neuropathy after starting vitamin D is likely sign your body needs more B vitamins.

See this link

drgominak.com/sleep/vitamin...

Suggest you try a good quality vitamin B supplement, one with folate in, not folic acid

Eg Igennus Super B complex or Jarrow B right

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

If you get increased pins and needles you may need additional sublingual B12 as well for several months - again it's mentioned in that link. Jarrow sublingual B12 or Better You do a B12 mouth spray

Improving vitamin levels will help your thyroid hormones to work better. This may increase TSH so that you finally get diagnosed or just get your own thyroid working better.

Magnesium is important, but unlikely any connection to neuropathy. We need good magnesium as well as vitamin D

articles.mercola.com/sites/...

sciencedaily.com/releases/2...

easy-immune-health.com/magn...

When taking vitamin D this naturally increases circulating calcium. Vitamin K2 Mk7 helps send calcium to bones

articles.mercola.com/sites/...

[Beachytoes2u]

Oh girl, I feel for you, I'm sort of where u are dealing with dr., testing, not the twins! I almost know more (from this site, people who are knowledgeable, share site info, empathy) I'm fasting, to do blood test in am., but my dr., I believe has no clue, can u get another blood test? Stay on the site, people will respond, to help or give encouragement. Feeling lousy is awful, I get bad stomache aches, do you? Your babies, can u get any help so you can rest? I hope so, hope u feel better.🌞🐝

[E_lizab8]

I'm no expert but maybe your diet could be making your thyroid fluctuate, I know mine does affect my symptoms. Are you gluten free?

[Beachytoes2u in reply to E_lizab8]

Yes, pretty good...at it, plus not eaten red meat for years due to stomach upset (clue yrs ago) for thyroid. No milk products, I'm a picket eater, which absent helped either. I'm no expert either, however, since finding this site I've learned so much, from so many smart, kind, people, I don't even know, for free! I'm grateful, be well🌻🌞