Headaches, dry mouth, cold sores and burning feet plus latest Test results

[Rennixon]

Morning (in the uk anyway)

Can I have some advice please about my latest results and subsequent symptoms.

As advised I had thyroid and vit tests and the results aren’t great.

Thyroid-

TSH 0.0005 -(1-4.3)

FT3 5.09 - (3.1-6.8)

FT4 23.9 - (12-22)

T4 130 -(66-181)

TgAB 162 -(115-300)

TPOAb 9 -(0-34)

Vits

Vit D 41.1 <50 deficient

Folate 7.97 -(40-60.8) deficient

Ferritin 40 -(44-150) deficient

B12 Active 89.4 -(37.5-188)

My levo has been reduced from 150mcg to 125mcg, but the lab didn’t test T3 ( I guess because my T4 is over range, as they’ve always tested before and I know the GP asked)

I have enough levo to take 150mcg in order to boost my T3 levels.

Any advise welcome especially on Vit D supplement

Thx

L

[SlowDragon Administrator]

Would suspect your FT3 is extremely low

Suggest you get TSH, FT3 and FT4 tested via Medichecks

What supplements do you currently take?

vitamin D, folate and ferritin are terrible and you need to see GP for prescriptions for vitamin D and folate

Ferritin will need full iron panel testing and likely iron infusion, or iron supplements

Vitamin D - GP should prescribe 1600iu per day for 6 months

Local CCG guidelines

clinox.info/clinical-suppor...

GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

If vitamin D is low, B vitamins may be too. As explained by Dr Gominack

healthunlocked.com/thyroidu...

Folate is deficient

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be more beneficial than folic acid prescribed by GP

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

I prefer Igennus Super B complex. Nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

[Rennixon in reply to SlowDragon]

Thanks @SlowDragon

I stupidly stopped taking my Vit d and b12. I’ll look to get these back into my routine now.

I’m hoping to see the GP asap to get the levo back up, I’ll ask about folate and Vit d too- in fact I’ll ask for everything! Haha!

[SlowDragon Administrator in reply to Rennixon]

You will need GP to do full iron panel test for Anaemia

[Rennixon in reply to SlowDragon]

Yep - added to list, thank you, got appointment on Friday.

Thank you

[SlowDragon Administrator in reply to Rennixon]

Burning feet is usually peripheral neuropathy.

Getting vitamin D and B vitamins optimal likely to help...As described here .... by Dr Gominack

healthunlocked.com/thyroidu...

[jamesal0]

Youre not processing the T4 and it's just pooling in your system. You can try quiting Levo for 3-4 days until you head ache goes . Your TSH will also begin to look a little more normal (1-4) . You then need to work out how much Levo you can tolerate per day, my guess is around 75-100mcg. Watch your midday temp should be no less than 36.2-4C, make sure you heart beat doesnt get below about 50 per min , hair doesnt get brittle/ fall out, and nails dont get ridges/lines in them. They are all signs of not enough Thyroid. Your TSH can be up between 5 and 10 without any real drama's. It's more about how you feel than worrying about numbers on a blood test.

[Rennixon in reply to jamesal0]

I came off levo about 6 weeks ago for a few days. I’ve always needed T3 at the top of the range and now it’s fallen. How can reducing my T4 help? If I go lower I get palps and feel really awful. I understand my body can change, but is there an argument for me reducing levo below 125mcg, surely my T3 will then go lower??

[jamesal0 in reply to Rennixon]

You get palps from too much Thyroid. Once you take thyroid meds beyond the optimal amount you sort of get inverted crazyness. ie palps, sore joints, tendon pains, finger tips hurt, foot pads hurt etc. The symptoms will disappear for a few hours after taking your Thyroid meds and then re-appear 4-5 hours later. Making you think you need more Thyroid. But really you need lots and lots less to get back down. This takes 3-4 days of no Levo or NDT until the body can eject the stuff. Once you start feeling better then you begin to sneak 50% doses of Levo or NDT until you start feel poorly again. You then fiddle around for a week or two and work out the correct dose for you.

[Rennixon in reply to jamesal0]

I’m really confused as to what you think is happening. I was on 125 for years and felt dreadful it was a battle to get it up to 150 and I felt great! Then the gp noticed my T4 was high and lowered it again. All those symptoms have now come back including the palps, aches and pains, headaches etc. I know my vitamins needs sorting and I’m on that, but lowering my levo even more seems too drastic. When I came off it for a few days it made me really ill too.

[jamesal0 in reply to Rennixon]

thats not what you said in your post and you have a TSH of 0

[Rennixon in reply to jamesal0]

Sorry if I didn’t make that clear. I’ve just looked historical test results I have and they are all giving me a TSH of 0.2 or 0.1 on different levo doses from 75-100-125-150 -confused 🤔

[jamesal0 in reply to Rennixon]

"TSH of 0.2 or 0.1 on different levo doses from 75-100-125-150" means you were taking too much even back at 75. I ref my "inverted crazyness" comment - you can keep going up and up but nothing works when what you really need is less. The only way to work it out is stop Levo for 3-4 days put up with the bla and see if the headaches and burning feet go away

[Rennixon in reply to jamesal0]

Yes I agree - although I know there’s a general consensus that a TSH of 1 is the aim, I’m obviously not in that category. So to stop the pooling I need to stop T4 for a few days and then reintroduce it in increments until I feel better?

(Sorry - having a mind fart) so say I take 50mcg -how long should I leave it before increasing /decreasing the dose if I still feel ill?

[jamesal0 in reply to Rennixon]

there is no right answer. After 3-4 days just start back on 25 for a few days and see where it goes, look for the symptoms like headaches, brain fog, hands and feet begin to burn or numb, eye ball pain, heart beat speeds up, midday temps, nervous bladder, hair/scalp crawls etc. If you last on 25 for a week go up to 50 and so on. Don't be scared of staying on 25 for a few months - if that's what is working for you. As you recover you will be able to convert more and more and hence take more T4.

To make small quantities of Levo just break 50 and 100's in halfs and quarters. Longer term you may need Vit B12 injections, some T3 and or Sex hormones like Testosterone or Estrogen too.

[Rennixon in reply to jamesal0]

Thank you.

I have plenty of 25mcg tablets to do it gradually. I’ll ask the doctor to do hormone test too, as that could be a factor.

[Angel_of_the_North in reply to jamesal0]

Sadly, stopping levo doesn't necessarily make TSH rise and with poor conversion it could make T3 drop way too low. Most healthy people have a TSH around 1.2, so no way is 5-10 going to make you feel healthy - only a very few people will feel well with TSH that high (and therefore really low thyroid hormones. What many of us really need is some T3, as conversion gets worse when T4 gets too high and TSH too low - something to do with deiodinases - but fat chance. I get a headache when my sex hormones are too low

[jamesal0 in reply to Angel_of_the_North]

You need T3 to make T3. So throwing more Levo at people who are already struggling with conversion does nothing other give them a shocking headaches and burning feet. So I completely agree with you that Rennixon will need T3 or NDT but first she needs to get her TSH up. Most likely she will suffer her symptoms until she is some where between TSH 5-10 but we will see. Anyway once she dumps all the T4 and just adds a little T3 or NDT she will feel a whole lot better. NHS wont treat unless you have a TSH approaching 10 so I can't see how running a TSH in the 5-8s is a real drama.

[Angel_of_the_North in reply to jamesal0]

Just because the NHS does something doesn't mean it's right - in fact most often the opposite. NHS is quite happy for people to become effectively disabled and unable to work as that's not a drain on their budget. Actually you need TSH to make T3 plus D1 and D2 deiodinases (but not too much D3)

[Rennixon in reply to Angel_of_the_North]

Thank you. I need to get my vitamins sorted as this could be a cause. I’m on gf diet and if what read is true then this has helped the thyroid antibodies reduce considerably. I’m interested in what you say about the thyroid deteriorating over time(I’ve been hypo for 19 years-treated for 17). Does the conversion get worse too?

[NatChap in reply to Rennixon]

I would address your vitamin levels before messing with your levo otherwise you won't know which it is that is improving your symptoms. You know for a fact that you are deficient in D and ferritin so it makes sense to sort them out. I have been deficient in both and it makes you feel terrible. You also need vit and mineral levels to be good in order for any thyroid meds to work effectively so absolutely no point starting NDT yet as you'd probably feel worse. X

[Rennixon in reply to NatChap]

Thanks Nat, I’m on it....Oh the joys of being hypothyroid. Went to dr this morning to ask for bloods on vits and hormones and bless her she got her little note book out and read her scribblings on hypothyroid and optimum levels of tsh, T4 and T3 🙄, then at the end of the conversation she complimented me on being so knowledgeable !

I now have tests booked in. 🤞they do T3, as I asked her to specifically ask for it. I’ve been down this path before though and I can’t imagine it will get any better whilst the dr keeps driving down the dose based on tsh 🤦🏻‍♀️ I’ll be in a mess and have to take hubby with me to back me up.

[NatChap in reply to Rennixon]

Good luck 🤞