Problem with GP: I am at the end of my rope. My... - Thyroid UK

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Problem with GP

G1K2 profile image
G1K2
35 Replies

I am at the end of my rope. My GP has put me down to 25mcg of levothyroxine every other day due to a constantly suppressed TSH. I am very unwell and due to have cataract surgery on the 14th. I am still taking 25mcg every day as I had extra tablets. The GP has said my results are normal (already posted). I have developed lots of other health problems. I have Candida and yeast is in everything. I joined this forum because I couldn’t digest my food due to no or low stomach acid and can’t take betaine HCL and apple cider vinegar has yeast in it. I still can’t eat all this time later and am now so weak and virtually bedbound. Can any of you lovely people help me. Thank you.

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G1K2
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35 Replies
greygoose profile image
greygoose

Buy your own levo and self-treat.

Can you tolerate vit C? You could try taking some vit C before every meal, see if that helps. :)

G1K2 profile image
G1K2 in reply to greygoose

Hi grey goose. Where would I get it from and how much to take. I haven’t tried Vitamin C before a meal. Thanks for advice. Take Care.

greygoose profile image
greygoose in reply to G1K2

If you're taking 25 mcg at the moment and you want an increase, take 50 mcg.

As to where you would get it, I'm afraid I can't help you with that because I don't take it. What you should do is write a new post and ask people to PM you with links to their trusted on-line sources. Then, PM an admin with the link to check that it is legit, and not a scam. :)

G1K2 profile image
G1K2 in reply to greygoose

Thanks Greygoose for replying. 😊

Jillymo profile image
Jillymo

Sorry to hear of your issues.

I am not going to comment on your thyroid med as I am having issues of ny own so will leave that to other's.

Has your Gp checked your Folate and B12 ?

G1K2 profile image
G1K2 in reply to Jillymo

Hi Jillymo Thanks for replying. The GP has checked Folate and B12 and they are okay. Sorry you are having problems with your thyroid meds too. Take Care.

SlowDragon profile image
SlowDragonAdministrator in reply to G1K2

The GP has checked Folate and B12 and they are okay.

Please add actual B12, folate, ferritin and vitamin D results

tuchwood profile image
tuchwood

Sending you a private message re where to buy

Bertwills profile image
Bertwills

Hello, I’ve had success with using oregano oil capsules against Candida & yeast overload. I buy mine from Amazon but you might find it elsewhere. It is strong, Google for more information but it’s never upset my stomach, apart from some herby burps!

Oregano oil capsules for stomach health
G1K2 profile image
G1K2 in reply to Bertwills

Thank you very much for this advice Bertwills. I will try them. Take care.

dinahdough profile image
dinahdough

If you can't take betaine HCLfor low stomach acid there are a few other things that might help. For instance, a zinc deficiency can sometimes cause low stomach acid. This article mentions it plus gives a couple of other suggestions:

medicalnewstoday.com/articl...

H pylori can also cause low stomach acid - have you been tested for that?

Then there's digestive bitters, they can also apparently help increase stomach acid:

parsleyhealth.com/blog/dige...

I believe digestive enzymes can be helpful too. I have a great little book called "Natural Alternatives to Nexium, Maalox, Tagamet, Prilosec and other Acid Blockers" by Martie Whittekin which has good information on them plus a chapter on yeast/candida.

Hope you find something that helps and feel better soon.

G1K2 profile image
G1K2 in reply to dinahdough

Hello dinahdough. Thank you for the link. I will read the one about Zinc deficiency. I will read that. I have never been tested for H.Pylori. I will look to that too. I have never taken digestive bitters or digestive enzymes. Thank you for the second link. I was going to try Apple Cider Vinegar but I have just found out that it has yeast in it. That sounds a good little book you have. Really appreciate all the advice. My stomach is really not working properly at all. Thanks again. Take Care and have a good day.

.

Bertwills profile image
Bertwills in reply to G1K2

I take digestive enzymes too. Very helpful. Mine are by Time Health.

G1K2 profile image
G1K2 in reply to Bertwills

Thank you Bertwills. Appreciate reply. Take Care.

SlowDragon profile image
SlowDragonAdministrator

What were your most recent thyroid and vitamin results

ALWAYS test early morning and last dose levothyroxine 24 hours before test

Absolutely ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12

When were these last tested

What vitamin supplements are you taking

G1K2 profile image
G1K2 in reply to SlowDragon

Hello SlowDragon

TSH 0.02 mlu/L 0.30 - 4.80

serum Free T4 17.4pmol/L NR 7.7. - 20.6

Serum Free T3 4.8 pmol/L NR 4.2 - 6.9

Serum Vitamin D 23 nmol 25 Deficiency

Serum Ferritin 118.5 ug/L NR 11.00 - 307.00

Serum Folate 5.51 ug/L NR 3.00 - 20.00

B12 459ng /L NR 145 - 914

Taken on 15th April

Also said Numerous Platelet Clumps on Blood Film unable to give a platelet count but appear plentiful mild polychromasia. I cannot tolerate any supplements or food.

.

SlowDragon profile image
SlowDragonAdministrator in reply to G1K2

was test early morning and last dose levothyroxine 24 hours before test

Free T4 (fT4) 17.4 pmol/L (7.7 - 20.6) 75.2%

Free T3 (fT3) 4.8 pmol/L (4.2 - 6.8) 23.1%

Terrible conversion rate of Ft4 (levothyroxine) to Ft3 (active hormone)

Improving vitamin levels essential

Vitamin D is deficient

Folate and B12 inadequate

G1K2 profile image
G1K2 in reply to SlowDragon

Thank you for your reply. What do I do about the levythyroxine if the doctor won’t give it to me.

SlowDragon profile image
SlowDragonAdministrator in reply to G1K2

See thyroid specialist endocrinologist

You need either dose INCREASE in Levo or addition of T3 prescribed alongside levothyroxine

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

And essential to work on improving low vitamin levels

GP should prescribe loading dose vitamin D

which vitamin D supplements have you tried

Vitamin D drops in just olive oil might be best to try

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

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

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

G1K2 profile image
G1K2 in reply to SlowDragon

Thanks SlowDragon for all that helpful information. I am at my wits end and feel no better than when I started.

SlowDragon profile image
SlowDragonAdministrator in reply to G1K2

Well that’s hardly surprising

Levothyroxine doesn’t “top up” failing thyroid, it replaces it. It’s extremely important to get dose levothyroxine increased up in 25mcg steps until on full replacement dose

But because your TSH is very low (possibly due to Central hypothyroidism) GP incorrectly wants to reduce dose

Aiming for Ft3 at least 60-70% through range

Levothyroxine is Ft4 and to convert in cells to Ft3 we need GOOD vitamin levels

Vitamin D at least over 80nmol

Serum B12 over 500

Folate at top of range

Ferritin at least over 70

Your Folate and B12 are too low

SlowDragon profile image
SlowDragonAdministrator in reply to G1K2

Was thyroid test early morning and last dose levothyroxine 24 hours before test?

SlowDragon profile image
SlowDragonAdministrator

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Some people need a bit less than guidelines, some a bit more

You need thyroid specialist because your TSH is too low

Meanwhile ESSENTIAL to be working on improving low vitamin levels

suggest you look at vitamin D drops in oil

Perhaps try this one

vivolife.co.uk/products/d3-...

Start with just one drop and build up

Looking to be taking 6000-7000iu per day for 6 weeks to improve vitamin D deficiency

Then likely to need 3000-4000iu per day on going

Aiming for vitamin D at least over 80nmol

G1K2 profile image
G1K2 in reply to SlowDragon

Morning SlowDragon. What is Central Hypothyroidism. Does that mean it is that and not Hashimotos.

SlowDragon profile image
SlowDragonAdministrator in reply to G1K2

Hashimoto’s often results in sluggish or slow to respond TSH

TSH is message from pituitary telling thyroid to work

GP will want to keep TSH within range …… regardless of how low FT3 is

Central hypothyroidism is when Pituitary doesn’t respond correctly to low thyroid hormone levels

With hashimoto’s this can be due to levels changing up and down dramatically. TSH gives up

Or can be due to poor conversion of Ft4 to FT3 - usually due to low vitamin levels

Can also affect cortisol levels

Do you feel worse in morning than evening? Classic adrenal/cortisol symptoms

SlowDragon profile image
SlowDragonAdministrator

as far as GP is concerned a very low TSH means you need to reduce dose Levothyroxine

Actually you need to at least stay on same dose, or ideally increase slowly

But essential to get vitamin levels up

SlowDragon profile image
SlowDragonAdministrator

request GP do full iron panel test

High ferritin can be misleading with inflammation

You don’t currently eat any meat?

Or take iron supplements

It’s possible to have high ferritin but low iron especially if CRP is high

Have you had CRP test via GP - test for inflammation

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Stop iron supplements 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

G1K2 profile image
G1K2 in reply to SlowDragon

I feel worse in the morning.In October 2023 Cortisol was 549mno/L

NR166-507

CRPwas 194mg/LNR<5.0

SlowDragon profile image
SlowDragonAdministrator

So high cortisol common initially as adrenals try to compensate for low FT3

Try taking Levo at bedtime

This might give better results and possibly improve conversion

But most important to also work on improving vitamin D, folate and B12

G1K2 profile image
G1K2 in reply to SlowDragon

Thank you SlowDragon for your help

G1K2 profile image
G1K2 in reply to SlowDragon

In April 2024 Iron is 21.5 umol/L NR 11.0 - 32

SlowDragon profile image
SlowDragonAdministrator in reply to G1K2

Surprisingly iron is not too bad

G1K2 profile image
G1K2 in reply to SlowDragon

Do I not need an iron panel done then. The iron is all the Jacket Potatoes I eat. 😂

SlowDragon profile image
SlowDragonAdministrator in reply to G1K2

Well at moment iron looks ok 👍

G1K2 profile image
G1K2 in reply to SlowDragon

Thank you SlowDragon. At least something is okay. 👍

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