Appointment with endocrinologist : Hello I have... - Thyroid UK

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Appointment with endocrinologist

Linklondon profile image
38 Replies

Hello

I have been to see endocrinologist today, to discuss my thyroid problems,low hba1c, high blood pressure and high cholesterol

Tsh: 13.9 (0.03 -6.00)

T3: 3.6

T4: 18.4 ( 10.4 -24.5)

Cholesterol: 7.7 (4.5)

B12: 249 (160-1000)

Rbc: 3.86 (3.80-5.50)

Hba1c 3.6 ( 4.00 to 7.00)

He has increased my thyroxine to 200 mg and swap to 175mg alternate days

He has ordered cortisol blood test and asked gp to supply me with a blood glucose machine to monitor each day. I have an appointment with nhs endocrinologist in july so hopefully thing's have improved.

He thinks once my thyroid levels are under control my cholesterol should improve.

I asked if I could possibly not be converting but he didn't really give me any indications that could be a problem. I do!!

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Linklondon profile image
Linklondon
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38 Replies
greygoose profile image
greygoose

The increase he's given you is insufficient. It won't change much at all.

Difficult to say if you have a conversion problems without the range for the FT3.

Your vit B12 is much too low.

Linklondon profile image
Linklondon in reply to greygoose

My t3 range is 3.0-7.1

He also said my vit b12 is normal ?

greygoose profile image
greygoose in reply to Linklondon

All he means by 'normal' is 'in-range'. Yes, it's in-range, but too low down. A hypo needs it to be at least over 500. But doctors know even less about nutrients then they do about hormones.

So, your FT3 is pretty low! But your FT4 is low, too. And, your TSH is much too high - should be 1 or under. And you're already on quite a high dose of levo. So, how do you take your levo? Do you take it on an empty stomach, leaving at least one hour before eating or drinking? Do you take any other supplements or medication at the same time?

Linklondon profile image
Linklondon in reply to greygoose

I take my thyroxine first thing in the morning before breakfast and 2 hrs before other medications.

I'm not on gluten free diet as yet endo has recommended a referral to dietition to discus my otherwise quite healthy diet but I will ask about a gluten free diet plan.

Thanks for your reply.

greygoose profile image
greygoose in reply to Linklondon

Well, it's not a dietician you need, it's a gastroenterologist, to find out why you absorb so badly. You might have leaky gut, or something. What good is a dietician going to do you? Your diet is not going to raise your thyroid hormone levels.

Linklondon profile image
Linklondon in reply to greygoose

I think he was referring to my cholesterol but I will push the issue of conversion problem with next endocrinologist appointment in July (different consultant nhs).

Hopefully he will have more understanding he is also my sisters consultant and she is on t3 because of conversion problems.

So fingers crossed.

greygoose profile image
greygoose in reply to Linklondon

Your cholesterol is high because your T3 is low. It has nothing to do with your diet! Cholesterol is made in the liver, and the total produced is always the same, no matter how much you eat or don't eat. But, when your T3 is low, it cannot be processed properly and so mounts up in the blood. But, it's not any sort of a problem. It doesn't cause heart attacks or strokes. It is a very necessary nutrient. All your cell walls, your sex hormones and most of your brain is made of cholesterol. So, for goodness sake don't let them put you on statins!

And, a huge problem with dieticians is that they don't know the difference between fat and cholesterol, and tend to put people on low/no-fat diets, which are very dangerous. Have a look at the discussion on here :

healthunlocked.com/thyroidu...

Your cholesterol will come down as your T3 rises.

Your problem does not appear to be a conversion problem. It is an absorption problem. Having a TSH of over 13 on 175 mcg levo is not normal, and should be investigated. When you get your TSH down to 1, then you will be better able to see how well you convert.

Linklondon profile image
Linklondon in reply to greygoose

That's very interesting to know he actually said if I can't get the cholesterol levels down the only solution would be statins!! Which I'm very much against! I am hoping when my thyroid levels get back to normal that I can also come off high blood pressure meds because I don't think my diet or lifestyle is the problem.

greygoose profile image
greygoose in reply to Linklondon

I'm sure it's not. High blood pressure is often a hypo symptom. This endo doesn't know very much, does he!

Linklondon profile image
Linklondon in reply to greygoose

No not really and at £200 for a consultation that hasn't really solved my concerns i feel a little flat.

He was a very polite man who listened to all i had to say but didn't really give me much faith in resolving my thyroid problems.

greygoose profile image
greygoose in reply to Linklondon

I can understand that. And, I don't think he will.

Linklondon profile image
Linklondon in reply to Linklondon

I agree most of my levels came back within range but only just, but unfortunatly GPS always seem happy with that.

SlowDragon profile image
SlowDragonAdministrator

Your previous post showed extremely low vitamin D

healthunlocked.com/thyroidu....

Have you been supplementing to improve? Level needs to be at least around 80nmol, but around 100nmol may be better

Would agree with greygoose your B12 is too low

What about folate? Has this been tested?

Ferritin also needs testing

Are you on strictly gluten free diet?

Do you take selenium supplements?

Linklondon profile image
Linklondon in reply to SlowDragon

Hi yes my

ferritin 98 (10-291)

Folate 9.8 (3.0-20.00)

Not retested vit d

Rbc 3.86 (3.80-5.50)

Serum albumin 50 (35-50)

Liver function normal

Supplementing vit d with hux d3 20,000 hd for 16 days then one a month for 6 months

Thanks for your replies

SlowDragon profile image
SlowDragonAdministrator in reply to Linklondon

So do you have Hashimoto's? And if so are you on strictly gluten free diet?

You really need to retest vitamin D after 2-3.months on supplements

Are you supplementing magnesium and vitamin K2 Mk7 as you are on high dose vitamin D

articles.mercola.com/sites/...

You might benefit from a daily good quality vitamin B complex. One with folate in, rather than folic acid.

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...

Linklondon profile image
Linklondon in reply to SlowDragon

Thanks for your info, yes I have Hashimotos.

I take my thyroxine first thing in the morning before breakfast and 2 hrs before other medications.

I'm not on gluten free diet as yet endo has recommended a referral to dietition to discus my otherwise quite healthy diet but I will ask about a gluten free diet plan.

I will look to introducing more vitamins supplements magnesium and k2.

Thanks for your reply.

SlowDragon profile image
SlowDragonAdministrator in reply to Linklondon

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

With Hashimoto's, poor gut function means regardless of how good our diet is we can struggle to get correct nutrients

Poor gut function can lead to leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first, to definitely rule it out, but by far majority are gluten intolerant not coeliac

You don't need any gut symptoms at all

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

When vitamin D deficient then low B vitamins can result - see this link

drgominak.com/sleep/vitamin...

Linklondon profile image
Linklondon in reply to SlowDragon

Thanks for taking the time to explain so many things 😊

I was wondering if taking omeprazole 20mg could hinder my absorbtion problem too? I take celecoxib 200mg daily and the gp says I need the omeprazole to protect my stomach. I take them 2hrs after my medication so they don't interfere with them but ideally I would like not to take them at all and substitute with liqiud gaviscon as and when needed?

SlowDragon profile image
SlowDragonAdministrator in reply to Linklondon

How long have you been on omeprazole?

Celecoxib probably requires you take a ppi.

drugs.com/celecoxib.html

But PPI's and Levothyroxine don't mix. Perhaps there's a different medication you could take instead of celecoxib? Discuss with GP

PPI's lower B12 and magnesium and often upset hypothyroid patients. If you have to stay on it, then look at supplementing B12, magnesium and vitamin B complex as these all need to be optimal for thyroid

Low stomach acid can be an issue

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

pulsetoday.co.uk/clinical/m...

gov.uk/drug-safety-update/p...

Philandromic arthritus, may also be linked, like Hashimoto's to gluten and dairy intolerance. So if that was case you would improve both together by changing diet

Approx 80% with Hashimoto's find gluten free diet beneficial, and about 60% benefit from dairy free

Linklondon profile image
Linklondon in reply to SlowDragon

Thanks again for your interesting info, I'm quite shocked how much damage celecoxib can do to the stomach! I am now wondering if my low hbac1has something to do with this medication. I'm going to stop taking them and see how l manage and if I needed I will ask my gp for an alternative. I have been focussing on sulfasalazine maybe the problem but the rheumatologist says there is no connection but didn't think celecoxib could be! I've been taking it for 18months and looking at my thyroid, blood pressure and cholesterol over the last 12 months they have all become a problem! Hopefully this is the cause and I may start to improve.

Thanks again for your help.👍

SlowDragon profile image
SlowDragonAdministrator in reply to Linklondon

The arthritis may actually be caused by dairy and gluten intolerance

Lots on internet saying improvements by going dairy and gluten free

Obviously Hashimoto's patients are very often dairy and/or gluten intolerant. You do not need any gut symptoms at all, nor do you need to be coeliac.

Angel_of_the_North profile image
Angel_of_the_North in reply to Linklondon

At least an hour before breakfast or anything containing tannin or caffeine or dairy?

Gluten-free is easy - you don't need a diet plan, just stop eating processed grains and read labels on any pre-prepared foods. You don't want to eat gluten-free versions of processed food - just eat real food and prepare it yourself from scratch - no pasta, sandwiches, toast, cakes, wraps etc.

Judithdalston profile image
Judithdalston

Your endocrinologist's new dose of adding 25 mcg to your current 175 mcg dose alternate days will hardly make any difference- very odd prescription! If your TSH was nearer 'under one' then I would say yes it looks like you are poorly converting T4 to T3, but with your TSH so high it appears to be quite complicated. I hope some other forum members might advise you further. Your B12 might be 'normal'/within range, but your B12 serum should be more 500 plus. Yes your cholesterol should go down if Thyroid is properly medicated. Do you know other Vit D, folate and ferritin levels?

Linklondon profile image
Linklondon in reply to Judithdalston

Hi yes my

ferritin 98 (10-291)

Folate 9.8 (3.0-20.00)

Not retested vit d

Rbc 3.86 (3.80-5.50)

Serum albumin 50 (35-50)

Liver function normal

Thanks for your replies

Marz profile image
Marz in reply to Linklondon

You mention other medications - could they be affecting uptake or skewing results ?

Can you share the meds you are taking ?

Linklondon profile image
Linklondon in reply to Marz

I take

Amlodopine 10mg

Ramiprill 5mg

Sulfasalazine 500mg x6

Celecoxib 100mg x2

Tibolone 2.5mg.

Marz profile image
Marz in reply to Linklondon

Ah that's quite a list. I'm on my phone so can't check them out for contra-indications with the levo you are taking. Are they blood pressure meds ? Sorry I do not know much about meds ....

Linklondon profile image
Linklondon in reply to Marz

Amlodopine and Ramiprill are for blood pressure.

Sulfasalazine and celecoxib are for autoimmune palidromic Rheumatism

Tibolone is substitute hrt.

My gp has been in touch with my rheumatoid specialist and my meds have no effect on my thyroid problems.

Marz profile image
Marz in reply to Linklondon

ncbi.nlm.nih.gov/pubmed/125...

As your FT3 is so low - it could be the reason you are having blood pressure issues. Needs to be higher in the range. My heart would tell me when my next dose of T3 was needed ! - now all settled.

Most conditions start with the gut - so cutting out gluten could help heal the gut - as others have described - and could have a positive effect on the Rheumatism too. So it is possible to reduce your intake of meds ....

Linklondon profile image
Linklondon in reply to Marz

Thanks for your reply

I would like to be able to take less meds which my list seems to be growing with age! So anything that helps that would be great.

Marz profile image
Marz in reply to Linklondon

There are many young members on the Forum who also take several medications. I think GP's are sometimes a little lazy in searching out the root cause - far easier to treat symptoms with a pill or potion. I am almost 72 and after years of battling health issues - I only take T4/T3 and supplements.

Am wondering if you clicked onto the link I posted above for you - about LOW T3.

Linklondon profile image
Linklondon in reply to Marz

Thanks for your reply,

yes the article is very interesting and I am hoping when I have my next appointment I can be armed with more knowledge from you helpful members. Maybe educate him too! 👍

Marz profile image
Marz in reply to Linklondon

Well Good Luck with that one ! I notice you recently joined this forum - so may not be aware of the struggles so many have had with GP's and Endo's in obtaining the appropriate Thyroid treatment. I have been reading/posting and responding for almost 7 years here - so I am possibly less optimistic than you are above ! I live in Crete and take care of myself and hubby and we both have Hashimotos - only taking T4/T3 and supplements .... We are 79 and 71 - so it can be done :-)

Judithdalston profile image
Judithdalston in reply to Marz

An interesting article Marz. I haven't had many T3 tests over my 12 years of hypothyroidism( had to pay for those I've got- but shown to Gp and Endocrinologist), but notice my first one in 2006 had T3 of 3.2, so not much off the under 3.1 of this paper. Yet rather than consider this just get more and more drugs related to 'high' (5) cholesterol, 3 BP drugs ( including beta blockers that Dr Lowe stresses is part of the problem of poor thyroid health as they suppress metabolism). Frightening!

Marz profile image
Marz in reply to Judithdalston

Have you considered self-medicating with T3 ? I live in Crete and am fortunate to be able to take care of myself with T4 and T3. I do have a prescription for the T3. There are many articles out there about Low T3 - so worth having a search and a read. T3 is the most important hormone needed in every cell of the body - so if the level is low then there simply is not enough to go around and things begin to go wrong. Rather like trying to spread a teaspoon of butter on a loaf of bread ! Perhaps you could slowly wean off the drugs you are unhappy with and self treat.

Judithdalston profile image
Judithdalston in reply to Marz

Thanks Marz, yes decided in February, having spent 24/7 of winter on the sofa to DIY. Raised Levothyroxin to above FT4 range, and still T3 too low; improved supplementing. Then a month ago added T3 slowly, now on 25mcg Tiromel daily with 100 levothyroxin, much better but still some way to go. It was the diagnosis of fibromyalgia that was a step too far!

Marz profile image
Marz in reply to Judithdalston

Sounds as if you are well on your way to being sorted 😊 I too received the Fibro diagnosis in 2000 & Hashimotos in 2005 here in Crete !

Sorry should have read your previous posts/bio ! Feeling lazy today ....

Judithdalston profile image
Judithdalston in reply to Marz

Forgiven

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