Help &advice, next steps with endo: Recently... - Thyroid UK

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Help &advice, next steps with endo

JUUJOO profile image
32 Replies

Recently found this wonderful site and this is my first time posting after lurking for a few weeks gaining knowledge.

I'm worried my endo will discharge me at my appointment next month as im "in range" even though I still dont feel right, so looking for advice.

I was diagnosed Hyper/Graves June 2021 after feeling exhausted 24/7 and having hot flushes. Started carbimazole /propranolol July 2021. I was hospitalised with Agranulocytosis/neutropenic sepsis August 2021 and not allowed to take any further anti thyroid meds. I had Rai in October and started Levothyroxine November 2021. I had a very rough 6 months with terrible symptoms , i felt like i was having a nervous breakdown at one point. My levels came into range in April this year. I still felt rough - terrible sleep, washed out, no energy, terrible pmdd & long heavy periods, no organisational skills, brain fog, memory issues, hair loss, muscle pains, joint pains and generally not coping very well with every day life.

I asked about adding in supplements to help me feel better but apart from adding in 1000 units of vitamin D3 the endo wasnt interested. My gp said they weren't trained in supplements when i asked, so couldnt advise either. I asked my endo about testing my FT3 incase I wasnt converting well, but this was dismissed. Instead I was told my symptoms were perimenopausal and to try Hrt and to go back in November.

After research I upped my vitamin D3 slightly and now also take magnesium glycinate, selenium and omega 3. Ive also started bovine collagen which has helped massively with my hair regrowth even though the endo says it was a waste of time.

I started hrt and some symptoms have improved, however on the whole Im worse because as soon as I take the progesterone part, I turn into someone else - pmdd hell takes over for 2 weeks. Ive tried different types and am now trying a combined patch, but I suspect this wont be any different and i'll go back to square one. My gp says im progesterone intolerant.

I feel like my endo is trying to get rid of me, blaming my symptoms on the menopause. He is only interested in my Tsh. He never really listens to what I say, I even wrote a long email detailing all the symptoms I started getting after Rai and that I felt he didnt understand how I was feeling . Yet his letter after to my GP states that im feeling well yet fatigued....Sigh.

I feel he should be testing my FT3 at the very least so i know what the actual issue is. I am wondering if I should get some private blood tests done in advance of seeing him?

Any advice in handling this going forward? I've attached my blood tests from the last year.

32 Replies
Jaydee1507 profile image
Jaydee1507

Honestly can't read your numbers or ranges. Might be better to repost the screen grab in the comments.

Endo's sadly are mostly like this. Better to take charge yourself with vitamins. If Endo hasn't tested B12, ferritin, folate then get it done yourself and supplement as needed.

JUUJOO profile image
JUUJOO in reply to Jaydee1507

Is this better?

Test results
Jaydee1507 profile image
Jaydee1507 in reply to JUUJOO

Can read that thanks but there's no range for the folate. Folate does look very low though and your B12 isn't great. Thorne Basic B complex is recommended here to bring those up a bit.

As for thyroid you are still really hypo. A TSH above 2 is terrible on replacement, should be closer to 1. I would definitely recommend getting your own bloods done so FT3 can be seen.

I despair of Endo's, they really are the pits not listening to their patients and finding anything else to blame symptoms on rather than their atrocious ignorance of thyroid treatment.

JUUJOO profile image
JUUJOO in reply to Jaydee1507

Thanks, for some reason they didn't state the folate ranges so I'm not sure. I was looking at B vitamins aswell, but I wasn't sure if I needed them, I'll take a look at what you suggest, then maybe get some private bloods to include vitamins aswell. I despair... And I've only been dealing with this for a year! It's a battle.

Jaydee1507 profile image
Jaydee1507 in reply to JUUJOO

Sorry to say the battle doesn't get any easier really. If you can afford to I'd say to go to one of the Endo's on the T UK list. I mean if you can't convince your NHS Endo you actually do need more Levo then it's a sorry state of affairs.

Buddy195 profile image
Buddy195Administrator

Have you tried micronised progesterone (eg utrogestan), as this combined with oestrogel did help ease my anxiety. There is also an option to take progesterone vaginally if you have adverse symptoms with it orally. It may be useful to have a look at Dr Louise Newson’s free Balance App for further information/ up to date research articles. There is also an ability to post questions.healthunlocked.com/redirect... 

JUUJOO profile image
JUUJOO in reply to Buddy195

Yes thanks, I've tried utrogestan orally which was hell and vaginal pessaries also which wasn't much better. I'm now trying dual patches. I'll take a look at your link, thankyou.

JAmanda profile image
JAmanda in reply to JUUJOO

can I ask what happens if you take uttogestan? How do you know it’s that which is affecting you?

Also, the only way to decide what to do with meds is to get the full picture. Order full thyroid tests (tsh t3 and t4) from Medichecks or monitor my health or other provider and test first thing in morning, before meds and a week after stopping taking any b vitamins with biotin in. The repost here

Your t4 is reasonably high in range but could be higher so you could certainly have a dose increase. Sometimes you have to remind docs that the aim of meds is to alleviate symptoms not just to get the number in range.

Note that it can take weeks to feel improvement after increase in meds.

JUUJOO profile image
JUUJOO in reply to JAmanda

Thankyou for your advice again. Within 24-48hours after taking the utrogestan I get extremely fatigued and extremely low, then every day after I get angrier and angrier, less patient, more snappy, irritable, teary and generally a horrible person who can't handle life and feels like there is no way out. Then a few days after stopping the utrogestan, the symptoms completely disappear. When I was on the progesterone only pill years ago I felt like I was having a breakdown the closer I got to my period. I had to stop as I felt dangerously low.

JAmanda profile image
JAmanda in reply to JUUJOO

interesting. I’m quite quick to anger I just say. But dare I stop the progesterone with the risk? And isn’t progesterinecmesnt to be somehow good for the thyroid. I read bits and bibs everywhere but it’s impossible to get the full picture. If I don’t take the uttogestan I bleed and I really can’t stand the pain and exhaustion of that. So with hrt it’s all or nothing. And generally it’s meant to be good for you… so tricky.

JUUJOO profile image
JUUJOO in reply to JAmanda

It is tricky as I do feel some benefit from the Hrt, but the negative mental issues effect my kids and my husband, which isn't fair on them and it becomes a toxic environment . If this current patch I'm using is no better, I'll have to stop the Hrt. Ugh.

MaggieSylvie profile image
MaggieSylvie in reply to JUUJOO

Long time ago, I had those symptoms and didn't know it was the menopause as I was only 37. Eventually, when I moved to the area I now live, my GP measured my hormones. Has your GP done that? He prescribed progesterone and it really helped because that was what I was short of. I think most people take oestrogen, and perhaps that is what you need. But I'm not a medic - just commenting because what you are going through just doesn't sound right. Not going to write at length because if the problem isn't menopause, there is so much good advice from the thyroid experts who've written today. Hope you get it sorted soon.

JUUJOO profile image
JUUJOO in reply to MaggieSylvie

Thankyou, yes I've had these menstrual symptoms since having kids in my mid 30's. All the symptoms were the same as early menopause, but because of my age, even though my mum had early menopause in her early 40's, I was dismissed. Then last year (age 45) I'd had enough and the tests showed hyperthyroid/graves. So I was told fix thyroid first then menopause after. My hormones were tested this year and a year ago and I think are on the sheet.

MaggieSylvie profile image
MaggieSylvie in reply to JUUJOO

Well those hormones aren't doing much good on the sheet! You need the right ones inside! So fix the thyroid first - if that's the advice, they'd better get a move on and TAKE CARE OF YOU. No excuse. Your mother's early menopause should have been a clue (one that I didn't have). It's a matter of sorting the goats from the sheep, and if they think it's best to sort the thyroid first, ok. At least menopause won't (hopefully) last forever. My thyroid may date back a lot of years as well, but nothing has ever been done about it, so who knows? You've got a few years ahead of you, but you still need to take the bull by the horns. Gosh what a lot of cliches!

SlowDragon profile image
SlowDragonAdministrator

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Are test always done early morning and last dose levothyroxine 24 hours before test

FT4: 17.3 pmol/l (Range 10.8 - 25.5)

Ft4 is only 44.22% through range

So you’re under medicated. You need 25mcg dose increase in levothyroxine……suggest you start by initially only adding 12.5mcg…

Ferritin is terrible

You need full iron panel test for anaemia

Meanwhile working on improving low ferritin by increasing iron rich foods in your diet

Vitamin D is too low

What brand and how much vitamin D are you currently taking

Aiming to improve to at least 80nmol minimum

B12 and folate also too low

What brand vitamin B complex and B12 are you currently taking

JUUJOO profile image
JUUJOO in reply to SlowDragon

I take 100 micrograms and the brands have recently been different. Does it matter which one I take, just as long as its consistent?

Tests are always around 9am and I take my levo as normal. Which is around 11pm. Should I miss this one in future?

I have a full blood count, does that help with iron? I'll include a picture.

I take 3000units soft gel vit d3 by NU nutrition. (Endo suggested 1000 units)

I don't take a B /12 complex, but B6 is in my magnesium glycinate, 28g and also pantothenic acid, 12g. So I need to add this in?

Test results
JUUJOO profile image
JUUJOO in reply to JUUJOO

Not sure if that's correct or not.

Blood tests
SlowDragon profile image
SlowDragonAdministrator in reply to JUUJOO

I take 100 micrograms and the brands have recently been different. Does it matter which one I take, just as long as its consistent? Tests are always around 9am and I take my levo as normal. Which is around 11pm. Should I miss this one in future?

So your last dose levothyroxine was only 10 hours before test…..so Ft4 is in reality even lower if tested correctly at 24 hours before test

So even more under medicated than it appears in this test

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test 

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

which brands of levothyroxine have you been taking?

Many people find Levothyroxine brands are not interchangeable.

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Glenmark or Aristo (100mcg only) are lactose free and mannitol free. May be difficult to track down Glenmark, not been available very long 

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Accord only make 50mcg and 100mcg tablets 

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord  doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

New guidelines for GP if you find it difficult/impossible to change brands 

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

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

JUUJOO profile image
JUUJOO in reply to SlowDragon

Wow, I asked my endo re the timings of blood tests and taking my tablets but he said it didnt matter! I will follow your guidlines now, thanks. I have mecury pharmacy at the moment, but I have previously had Accord.

SlowDragon profile image
SlowDragonAdministrator in reply to JUUJOO

I asked my endo re the timings of blood tests and taking my tablets but he said it didnt matter!

That suggests endo is diabetes specialist, not thyroid

Always test thyroid levels early morning, ideally just before 9am if possible and last dose levothyroxine 24 hours before test

Only do private testing early Monday or Tuesday morning.

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

SlowDragon profile image
SlowDragonAdministrator in reply to JUUJOO

ok ….so Mercury Pharma and Accord are probably the most easily tolerated and interchangeable

SlowDragon profile image
SlowDragonAdministrator in reply to JUUJOO

I take 3000units soft gel vit d3 by NU nutrition. (Endo suggested 1000 units) 

how long have you been taking 3000iu ….has level increased

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

perhaps try vitamin D mouth spray

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 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.

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...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average……especially when increasing low levels

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

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...

Great article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

JUUJOO profile image
JUUJOO in reply to SlowDragon

Thanks for that - ive been taking the D3 for maybe 6 months. Ive not had any vitamins tested other than those i already shared, so no ídea of my levels. I will arrange some private blood tests to see where I am and post on here for your advice.

Will check out the links.

pennyannie profile image
pennyannie

Good morning to you :

I see you made column M for inflammation but other than a range we have no readings and sadly this pattern follows across all your vitamins and minerals.

RAI is known to trash core strength vitamins and minerals.

We can already see this with your ferritin reading,

RAI is also known to trigger Sjogren's Syndrome and fibromyalgia type symptoms.

Primary hypothyroidism caused by RAI is said to be more difficult to treat.

First and foremost it is essential to be dosed and monitored by your Free T3 and Free T4 blood test readings which when optimally medicated will result in a balanced ratio of T3 and T4 at around a 1/4 ratio and high enough in the ranges to relieve the symptoms of hypothyroidism - when taking T4 monotherapy.

We generally feel at our best when out T4 is up in the top quadrant of its range as this should in theory convert to a good level of T3 which is the active hormone that runs all our bodily functions.

T4 - Levothyroxine is a prohormone, a storage hormone, and needs to be converted within the liver into T3 and this conversion of the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D, plus inflammation, any physiological stress ( emotional or physical ) depression, dieting and ageing.

So we can take action on certain aspects and build back up where we can and this starts with the vitamins and minerals which all need to be up and maintained at optimal levels in order to support your body which has been damaged by the Rdio Active Iodine.

The action of RAI is to slowly burn your thyroid gland burnt out in situ.

The other option would have been to have had a thyroidectomy - it sounds a much more drastic action, but in reality it is a much cleaner and more precise treatment option, as RAI can be taken up, to a lesser extent, by other glands and organs within the body.

It is drastic action for an auto immune disease for which there is no cure - but Graves Disease is said to be life threatening if not treated and presume this is what you were faced with when very unwell a year orso, ago.

Have you throat sit open or ingest a toxic substance - it's like being between a rock and a hard place - it's a terrible shock the system which probably simply compounded your symptoms when diagnosed with Graves Disease - I don't know.

What does happen though is that your HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop - on which a TSH reading relies, is now disabled and likely broken, and this loop malfunctions as your thyroid is slowly burnt out and dies and the TSH becomes a totally unreliable measure of anything.

This disabling of the thyroid can take weeks, months or years as I'm not aware any follow up happens as one is declared ' sorted ' and dispatched out to primary care where the doctor seems to have to guess as to what is going on as blood tests in primary care seem even more difficult to run than when in hospital.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg and T3 is said to be around 4 times more powerful than T4.

The thyroid is a major gland and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

Some people can get by on T4 medication :

Some people find T4 seems to stop working at some point in time and find by adding in a little T3 - possibly to replace that little bit lost, restores their health and well being :

Some people can't tolerate T4 and need to take T3 only - Liothyronine medication.

Whilst others find their health restored better taking Natural Desiccated Thyroid which is derived from pig thyroids dried and ground down into tablets referred to a grains and contains all the same known hormones as that of the human land.

Currently in primary care there is only T4 monotherapy and a referral to an endocrinologist is required to be assessed as to your medical need for any other treatment option - though 20 odd years ago your doctor had all these options in his toolbox.

So, I'm going on and on like a broken record and have lost this sermon three times already.

I'm totally shocked that even an endocrinologist is not running a T3 and T4 to dose and monitor you on - even I was despatched from hospital with a TSH.T3 and T4 for my doctor to try and maintain.

First off we need to see a full thyroid panel to include the inflammation, antibodies a TSH, T3 and T4 and the vitamins and minerals as already detailed.

For Graves you might like dip into elaine-moore.com - I found Elaine's site the most well rounded of all I looked into - though 10 years after my RAI thyroid ablation.

Your Thyroid and How To Keep It Healthy sounds a funny one for us, but so worthwhile and Barry Durrant-Peatfield wrote this to empower his patients and it's an easy to understand basic physiological understanding of how everything works together.

Another book with the telling title - From Hyper to Hypo to Healing - Breaking the TSH rule written by another lady who went through Graves and RAI thyroid ablation - Barbara S Lougheed.

JUUJOO profile image
JUUJOO in reply to pennyannie

Thanks for all that info. I'm going to read through all the links and sort out some blood tests privately. I've probably learned more today than I have in months. I so wish I'd of found this page a year ago to help me navigate through this mess! I'm so shocked what I'm learning and how it is contradictory to what I'm told from my Endo and my gp.. Thankyou for the info.

pennyannie profile image
pennyannie in reply to JUUJOO

Yes, it's massive learning curve and you are now with information overload.

Graves is a stress and anxiety driven auto immune disease so please just go calmly through everything and pace yourself.

I feel the hospital have let you down badly in not picking up your very low ferritin level, not monitoring your vitamins and minerals and not even running T3 and T4 blood tests results with which you dose you properly.

You can come back from this, one step at a time and first we need to see a full thyroid panel as detailed previously.

I think you are still under the hospital and they have a duty of care for you:

You could complain to the Head of Endocrinology and ask for a second opinion as to your results and treatment and would hope the appropriate blood tests would be run and the necessary action - actioned -

Take good care :

SlowDragon profile image
SlowDragonAdministrator

looks like you have tested vitamin D, folate or B12 since 2021

First step is to retest these levels

SlowDragon profile image
SlowDragonAdministrator

you do know ferritin 27 was far too low in April this year

Any obvious reason for low ferritin

Vegetarian or vegan ?

Heavy periods?

cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Also See page 7 on here 

rcn.org.uk/-/media/royal-co...

Look at increasing iron rich foods in diet 

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

An article that explains why Low ferritin and low thyroid levels are often linked 

preventmiscarriage.com/iron...

 

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin 

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin 

healthunlocked.com/thyroidu...

I think your iron test results show iron levels are ok and it’s just Ferritin that’s low

SeasideSusie or humanbean may pop along and comment….they understand iron and ferritin results very well

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Here’s absolutely excellent reply by @humanbean

on iron and ferritin panel test results for another member 

healthunlocked.com/thyroidu...

Good explanations of iron 

theironclinic.com/iron-defi...

theironclinic.com/ironc/wp/...

Helpful info on iron infusion and supplements 

healthunlocked.com/thyroidu...

Excellent reply by Blearyeyed about iron in this post

healthunlocked.com/thyroidu...

Reply from Radd

healthunlocked.com/thyroidu...

JUUJOO profile image
JUUJOO in reply to SlowDragon

I asked for a Ferritin test when my Endo was away as my hair was falling out continuously. Previously I'd had extremely heavy and sometimes 2 periods a month since having the Rai. I had no periods previously since having covid in 2020, which I think started the graves on 2021. Then the Rai kick started the periods and I bled on and off for months.

SlowDragon profile image
SlowDragonAdministrator in reply to JUUJOO

request GP or endocrinologist do full iron panel test for anaemia

Meanwhile suggest you read the many posts and replies by humanbean on low iron/ferritin

Zaphy74 profile image
Zaphy74

Have you thought of having your cortisol checked..when you have these conditions. They can be in groups i.e auto immune. And then other conditions can follow like d3 or calcium issues . Ir vitamin d deficiency. List is endless.

JUUJOO profile image
JUUJOO in reply to Zaphy74

Yes I think my cortisol was something like 460 top end of the range

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