Really fed up: Good morning everyone, just seen... - Thyroid UK

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Really fed up

Miffie profile image
10 Replies

Good morning everyone, just seen my new young and seemingly keen GP. Following a battery of blood tests he assures me everything is fine! I was even tested for ovarian cancer. I do still have a huge constipation problem but a daily lacitive is all that is required. He has now decided that although I still have a tongue too large to let me eat, I need a new thyroid function test in a couple of weeks. We agree they more than likely won’t do T4 and T3 even if he asks which apparently he will, but let’s wait and see. He then suggests I see him a couple of weeks after that to see if I am “better”. If not he will refer me to a Speech and Language therapist. This will teach me swallowing techniques, not sure why I need this as nothing wrong with swallowing reflex. Apparently the white lumps along the side of my tongue which my dentist worries about are simply my biting my tongue. Never bit my tongue that I know of, my husband was very surprised to hear this as he has never noticed either!

We discussed my low T4 andT3 levels and that I had asked for a referral to an endo. Apparently I do not meet the criteria for a referral no matter how bad my symptoms. I suspect he agrees with me but his hands are tied.

I can’t believe I will probably have a speech and language referral!

So shocked I left without a copy of my results! Had to email requesting them.

End of rant, sorry for myself today

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Miffie profile image
Miffie
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10 Replies
SlowDragon profile image
SlowDragonAdministrator

How much Levothyroxine are you on

Obviously essential to test vitamin D, folate, ferritin and B12

Highly likely you have low FT3 and low vitamins

All thyroid tests should be done as early as possible in morning and fasting and last dose levothyroxine 24 hours prior to test

Miffie profile image
Miffie in reply toSlowDragon

SlowDragon I am currently on 150mcg daily. I had low VitD on last testing and am now supplementing adding Magnesium and K2 for best results. I have felt the beginnings of a slight change in that the dreadful over heating has now gone. Back to being blissfully chilly. Due to have NHS bloods done in a couple of weeks. I will probably have to pay out again for anything other than TSH. After 55 years of being underactive I have say this is the offer to refer me for speech and language therapy is the most ridiculous suggestion I have come across. It seems a complete waste of hard pressed recourses.

I am also diabetic which makes conversation more of an issue as times goes on. The GP agrees with this.

Maybe I shouldn’t have kept my frustration under control and just cried!

Hillwoman profile image
Hillwoman in reply toMiffie

To be quite honest, I think more of us should find ways to express our displeasure and distress at our poor treatment while we are still in the consulting room. But if you weep, you'll be put on antidepressants.

As soon as my half-moon reading specs have had new lenses, I'll be deploying them in any healthcare situation. It's amazing how they make doctors quake. 😈

SlowDragon profile image
SlowDragonAdministrator in reply toMiffie

You need FULL Thyroid testing

TSH, FT4 and FT3

both TPO and TG Thyroid antibodies if never been tested (especially if type one diabetic)

Essential to test vitamin B12, folate ferritin and Vitamin D

Miffie profile image
Miffie in reply toSlowDragon

Thank you, I have had everything tested. I have never had raised antibodies. Vit D low, now supplementing. Everything else is good on blood tests. I am absolutely incredulous at his take on things. Take enough laxative to use the loo daily, even if I only eat two pieces of fruit a day. If I still cannot put any more food in my mouth in a months time due to tongue size I will be sent to speech and language. Having had an underactive thyroid for 55 years I do know how it makes me feel, I cannot wait to discuss my bowel problems with the speech and language consultant. Who knew?

Thank you SlowDragon.

SlowDragon profile image
SlowDragonAdministrator in reply toMiffie

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Can you add the actual results and ranges of TSH, FT3 and FT4

TSH should be under 2

FT4 in top third of range

FT3 at least in top third of range

B12, folate, ferritin and vitamin D too

Vitamin D needs to be at least around 80nmol and around 100nmol may be better. How low was vitamin D and how much are you supplementing?

B12 at least over 500

Folate and ferritin at least over half way in range

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Low vitamin D and low magnesium are common

Supplementing magnesium can help with low vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

sciencedaily.com/releases/2...

Magnesium supplements can also help with constipation. Many of us on here supplement magnesium.

Calm vitality magnesium powder is cheap and easy to use. Best to start with a small dose and increase slowly until you get desired results. Too much can cause diarrhoea!

conversion of FT4 to FT3 often gets worse over time, especially as we age, especially after menopause and also with being diabetic

Many patients need the addition of small dose of T3

Obviously first step is FULL Thyroid and vitamin testing

Miffie profile image
Miffie in reply toSlowDragon

I did have tests done and posted results on here about a month ago SlowDragon. Sadly I am unable to copy and paste now. Thank you again for your help.

I was for many years well on ndt.

Wish I could feel just a little less awful and not written off as I feel I have been. I may try a different GP next week.

SlowDragon profile image
SlowDragonAdministrator in reply toMiffie

Previous post with results

healthunlocked.com/thyroidu...

Vitamin D was extremely low at 21nmol

GP should have prescribed LOADING dose of vitamin D. That's 300,000iu over 6-8 weeks

Is that what was prescribed

Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

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

When vitamin D is low, B vitamins also drop. Vitamin D is needed for good gut bacteria. Good gut bacteria makes plenty of B vitamins

drgominak.com/sleep/vitamin...

Poor gut function due to low FT3, leads to low vitamin D, then low B vitamins

FT3 low. So you either need to return to NDT or get addition of small dose of T3 added alongside Levothyroxine

humanbean profile image
humanbean

Low levels of B vitamins and low iron will make the tongue swell. As a result the tongue is pushed against the teeth and it creates a scalloped edge.

The condition has various names - scalloped tongue, pie crust tongue, lingua indentata and crenated tongue. (I must admit I had only ever heard of the first two of those before today!)

You will need to get your B12 and folate levels tested. You will probably need to take a B Complex tablet or capsule, and you may well need a separate B12 supplement too. But don't supplement anything until you know how bad your results are. You may have Pernicious Anaemia, and that can only be tested for before supplementing.

B Complex supplements aren't all created equal. Some are better than others. In some people the body can't absorb and make use of B vitamins unless they are in their active form and don't require conversion within the body.

So for vitamin B12 :

Inactive forms = cyanocobalamin ; hydroxocobalamin

Active forms = methylcobalamin ; adenosylcobalamin

For folate :

Inactive forms = folic acid

Active forms = L-methylfolate and L-5-methyltetrahydrofolate

Other active B vitamins are listed here, although the list is incomplete :

jigsawhealth.com/blog/B-vit...

Some popular B Complex products on this forum are :

thorne.com/products/dp/basi...

shop.igennus.com/Super-B-Co...

Note that the first product has a dose of 1 capsule per day, and the second has a dose of 2 capsules per day.

...........................

The other possible cause of your scalloped tongue is low iron. You would need to test iron properly. Knowing just serum iron or just ferritin isn't enough. You need to know both, plus a couple of other things. A good finger-prick test is given on the first link, and read the second link to find out how to get money off the cost :

medichecks.com/iron-tests/i...

healthunlocked.com/thyroidu...

Once you know more about your iron/ferritin levels you could post the results in a new thread and ask for feedback.

...............................

Sadly, the other major cause of having a scalloped tongue is being under-medicated for hypothyroidism. It's easier to fix any mineral or vitamin deficiencies than it is to get a raise in dose for the treatment of hypothyroidism - so, fingers crossed, and good luck. :)

SlowDragon profile image
SlowDragonAdministrator in reply tohumanbean

Here's the recent Medichecks test results

healthunlocked.com/thyroidu...

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