Can anyone help?: Hello everyone I’m reaching the... - Thyroid UK

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Can anyone help?

Polly91
Polly91

Hello everyone

I’m reaching the end of my tether as I still have no answers. My GP won’t prescribe T3 & I’ve read from some people it’s not necessarily the answer? So I’m cautious but want to be better for my family’s sake.

I’m still struggling with a diagnosis. Still have prickly buzzing sensations in limbs & hands & feet & still have hot neck. Now head feels pressurised right at the top of the head (not temples) sometimes I get excruciating headaches. I’ve got dry mouth & other areas & im always drinking water.

Hypothyroid is a definite. But sjogrens ? Or Lymes are possibles. I had one test anti Ro & it was negative. The Lymes Elisa was also negative.

I’m going to see a private endo as I can’t wait any longer for NHS in case this is all hormone or thyroid related.

I have cut carbs down & limited/excluded gluten over last 2 weeks. Can’t say I feel any better but I’m losing weight I can’t afford to lose.

I wish I could get better- does anyone have any ideas?

Thank you

P xx

28 Replies
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Have you had B12 tested ? PA testing ?

EDIT - have now read previous posts !

Don't cut your carbs too much - why would you do that anyway? You need carbs to convert.

Polly91
Polly91
in reply to greygoose

I had heard the keto diet was good for immune system (in case it's lymes) & also as I was not very far away from being prediabetic. But perhaps I will increase while keeping gluten out.

Thank you GG

Many commercial gluten free products are very high in sugar, at least in the U.S., because it is believed it improves the taste. Read the nutrition label carefully. While keto was developed for diabetics, I, too, have been told it is not good for hypothyroidism.

It's a matter of choosing your carbohydrates carefully, whether grain based or fruit.

That's very interesting & might explain why I've not felt great since cutting carbs. So are fruit based carbs better than grain? Is that what you mean?

Thx so much

many hypo people do well on keto, but you need to make sure that you are eating enough fat as protein is just burned like carbs when carbs are low and protein is high. However, you do need carbs for conversion. What suits one might not suit another.

No, not exactly. What I mean is, that you choose perhaps brown rice rather than white, or a whole orange rather than orange juice.

greygoose
greygoose
in reply to Polly91

I think that's best, yes. :)

shaws
shawsAdministrator

The NHS has removed T3 from being prescribed. Even from patients who were feeling much better with it. There's a case before the House of Lords at present which you can read about on the pinned post on the right.

Have you had a latest blood test for TSH, T4, T3, Free T4, Free T3 and thyroid antibodeies. I do know the NHS mainly do TSH and T4 so the other tests are very informative. If you can afford a private test which is TSH, T4, T3, Free T4, Free T3 and thyroid antibodies- which is more informative: You have to be well-hydrated a couple of days before and it should be at the earliest possible (pin-prick tests) and members who've done so will respond in how best to do it.

GP should test B12, Vit D, iron, ferritin and folate as everything has to be optimal and deficiencies can also cause symptoms.

All blood tests have to be at the very earliest, fasting and a gap of 24 hours between last dose of thyroid hormones and the test and take afterwards.

The aim is a TSH of 1 or below and a FT4 and FT3 towards the upper part of the ranges.

Thank you. I’m hoping NHS might cover thyroid tests again but I don’t think they will do the free T4 & free T3.

All my ferritin iron folate and B12 were fairly optimal & VitD was a tad low but not significantly.

I just can’t figure out despite all the medical opinions how bad the symptoms are especially at night.

I think insomnia makes it 100x worse. I’ve taken Nytol & rescue remedy night time but they don’t help a lot.

Any help would be much appreciated

Polly x

Heloise
Heloise
in reply to Polly91

High cortisol again interferes with sleep, Polly. Low thyroid is notorious for affecting smooth muscle. It was one of my first symptoms. Can you afford to go private? You really need all the thyroid tests. I'm in the U.S. but in the UK you can use Medichecks? or Blue Horizon and get all of them including antibodies in a package. Would you want to try self medicating? You probably need adrenal support as well.

Polly91
Polly91
in reply to Heloise

Thanks Heloise

I will look into the cortisol test with one of these labs.

What do you mean by smooth muscle ?

I think I may start self medicating as I’m just not sure how much longer I can go on like this.

I’m sure my friends and family think I’m mad & just neee distraction but I know how I feel.

The last doctor I saw said as much & that either I will get better or I will get chronic fatigue 😟

X

Heloise
Heloise
in reply to Polly91

Polly, you have to turn off the opinions of people who don't have this condition. It is so serious because it affects your brain as well. Smooth muscle includes your esophagus and bowels.

Heloise
Heloise
in reply to Polly91

Watch a couple of these short videos about antibodies.

youtube.com/results?search_...

marigold22
marigold22
in reply to Polly91

I'm only replying re. your insomnia. I've recently discovered Gaba; one x 250mg tablet always gets me to sleep and I've suffered insomnia for years.

Also Vitamin B6 helps sleep. I have found this web page of great help - details about all eight of the B vitamins.

brainmdhealth.com/blog/how-...

helvella
helvellaAdministrator
in reply to marigold22

Just to point out the ludicrous headline on that link:

Do You Really Need All 8 B Vitamins?

What is the definition of a vitamin? Well it includes the word "essential". So, yes, you do rather need them!

Polly91
Polly91
in reply to marigold22

Thank you Marigold

I took 200mg magnesium last night & it helped a bit but still woke up at 5am with a headache which thankfully didn’t last & was replaced by a head tightening feeling at the top of my head (it’s a very unusual sensation ? Has anyone ever had that?).

I will look into GABA- where do you get it?

I also heard melatonin is effective and safe to use ? Does any have experience?

Thank you

Polly

marigold22
marigold22
in reply to Polly91

I get all my supplements via websites. My Gaba is by Swanson. Actually I had forgotten, but Gaba gets called Nature's Valium. I did try melatonin but it didn't help me. We are all different though.

Polly91
Polly91
in reply to marigold22

Thank you

SlowDragon
SlowDragonAdministrator
in reply to Polly91

How low was vitamin D

Most find vitamin D needs to be around 100nmol with Hashimoto's

Low vitamin D and insomnia are linked. Aslso low vitamin D and low B vitamins are often found together

drgominak.com/sleep/vitamin...

What were vitamin B12, folate and ferritin results and ranges too ?

Polly91
Polly91
in reply to SlowDragon

Vitamin D was 73 nmol/l which GP said was fine as I had been in hospital for a few days.

B12 1194 (180-700 ng/L)

Folate 11.1 ug/l (4.6-18.7)

Ferritin 150 ug/L (15-300)

Thanks. X

SlowDragon
SlowDragonAdministrator
in reply to Polly91

Many of us find Vitamin D has to be at least over 80nmol. Around 100nmol likely better

Polly91
Polly91
in reply to SlowDragon

Thanks SD. I ordered the vitamin D spray that many members recommend.

X

Polly91
Polly91
in reply to SlowDragon

Thanks SD this is very useful. I didn't know magnesium should be taken with vitamin D - I had always thought vitamin D should be taken during the day as it can cause insomnia and magnesium should be taken at night as it helps with sleep.

Thanks again

SlowDragon
SlowDragonAdministrator
in reply to Polly91

Magnesium must be four hours away from any thyroid medication

Vitamin D also four hours away if taking tablets or soft gels. If vitamin D spray it doesn't go into gut so timing less critical

Magnesium does help with sleep often

Sjogrens can be diagnosed with a negative blood test, and even with a negative lip biopsy. If you think it is sjogrens get it diagnosed by a rheumatologist who knows what they are doing. The neuropathy you are experiencing can get worse with sjogrens, it is important to get treatment as soon as possible.

It can take years to get a sjogrens diagnosis.

Polly91
Polly91
in reply to autowhen

Hello autowhen

Sorry for the delay- it’s been a tough month or so & I’m feeling worse not better. I do think I have sjogrens too as I have the dry mouth & other areas. Knees are aching too. The problem is I have Lymes too & if treatment for sjogrens is immune suppression that will make fighting Lymes even harder than it already is. Do you know more about sjogrens & treatment?

I see you are in Ireland - I was going to ask you if you knew of rheumatologist is Berkshire ?

Thank you

P x

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