One year on! No further forward : I was diagnosed... - Thyroid UK

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One year on! No further forward

Cheechy profile image
66 Replies

I was diagnosed with hypothyroidism last year and am currently on 100mg levothyroxine. While I’m told by my doctor that this dose is sufficient, and having recently had blood tests that support this...I honestly do not feel any better. The fatigue is overwhelming and aching neck and shoulder muscles are becoming very draining, so I’ve started to look at diet and the effects of other influences, such as anti-histamines and would you believe it antacids. The question I have is... are there any specialist doctors I can be referred to.. as I feel my own GP surgery are not particularly proficient in this area and have not received any information other than ‘take thyroid replacement ‘ ‘it’s a lifelong condition ‘. For years, I genuinely thought that how I felt was normal and everyone must feel like they have hit a wall - physically and emotionally- at various points throughout the day. Having had a very stressful job.. I am also wondering if working to targets, deadlines etc were contributory to the getting this condition. Sorry for lengthy post... I’m struggling to feel anywhere near normal and need to return to work soon. It’s been great to read so many peoples experiences and shared knowledge, but surely to goodness there must be professional help out there...🤞

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Cheechy
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shaws profile image
shawsAdministrator

There is apparently only professional help if we find that levothyroxine suits us and we are able to convert T4 to sufficient T3.

T4 - levothyroxine - is an inactive hormone. It should convert to T3 but we have to have a sufficient dose, be a good converter to T3 and enable our T3 receptor cells to be saturated. Its work then begins and that one dose of T3 lasts between one to three days.

Some people have Thyroid Hormone Resistance and it means they can only recover on T3 but with Resistance the dose of T3 would be enough to make others feel awful but Resistant patients recover and their symptoms are relieved.

I doubt few Endocrinologists or doctors are aware that people's T3 receptor cells can be resistant to thyroid hormones.

I take T3 alone but don't need a high dose but with T4 I remained very symptomatic and very unwell but T3 has resolved all symptoms.

Cheechy profile image
Cheechy in reply toshaws

Thank you so much, I’m seeing my GP on Friday and want to be as informed as possible, as I appreciate they are not specialists, but know something is not right!

shaws profile image
shawsAdministrator in reply toCheechy

From many posts on the forum, it would appear that doctors have been told that if the TSH and T4 is within the range that we're on a sufficient dose. The fact is that we have to sufficient to bring TSH to 1 or lower If we're on leothyroxine. Two tests aren't sufficient when we're newly diagnosed and, as mentioned by others, we may have to get our own tests and I'll give you links - for information:-

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/about_...

All blood tests for thyroid hormones have always to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take afterwards. Levo should be taken, usually first thing on an empty stomach with one full glass of water and wait an hour before eating. Some prefer a bedtime dose - in that case your stomach has to be empty so you should leave a gap of about 2 to 3 hours if you have had a meal but miss this dose if having a blood test next a.m. and take it after the test and night dose as usual.

If not improving we need a Full Thyroid Function Test and GPs rarely test all and that's why, occasionally, members get their own.

A FTFT is:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Always get a print-out of your results with the ranges for your own records and post if you have a query.

Doctor should test B12, Vit D, iron, ferritin and folate - deficiencies also cause symptoms.

thyroiduk.org.uk/tuk/about_....

thyroiduk.org.uk/tuk/testin...

Cheechy profile image
Cheechy in reply toshaws

Very comprehensive information posted - so many thanks. And yes, my tests have been taken mid morning after my early morning dose. As most practices- my GPs often vary as does the advice given- so I’m going to push for specialist advice- who knows... it’s worth a try.

Muffy profile image
Muffy in reply toCheechy

Mid morning to have your blood drawn is too late, try for 8/8.30 if possible and also don’t take your thyroxine until after your blood test. Your TSH will be at its highest early in the morning.

Cheechy profile image
Cheechy in reply toMuffy

It’s incredible that these doctors do not think to give out this simple measure of advice. In fact, I’ve had no direction or guidance to date- just take the meds! My GPS are pretty decent so I will broach the subject with them.

shaws profile image
shawsAdministrator in reply toCheechy

Few doctors are experts with regard to thyroid hormones as they seem to be directed that the TSH and T4 alone are all that is required. If both are 'in range' they don't increase dose, when we need a TSH of 1 or lower and Free T4 and Free T3 in the upper part of the ranges - rarely tested.

shaws profile image
shawsAdministrator in reply toCheechy

Never take a dose of thyroid hormones before a blood test as your results will be very skewed. No wonder you aren't feeling so good. It has to be the earliest possible test so make it well in advance so you get the time which will give the best results.

A gap of 24 hours has to elapse between your last dose of levo and the blood test and take it afterwards.

Always get a print-out of your results with the ranges. Ranges are important and they also allow members to respond. The reason being that labs differ in their ranges and they are important for responses.

greygoose profile image
greygoose

Can you post those labs that said you were on the right dose? 100 mcg is not a very high dose. Most people need more than that. But, doctors are so very ignorant about thyroid. Thyroid specialists are very, very thin on the ground.

Cheechy profile image
Cheechy in reply togreygoose

I will ask for the results on Friday... I’ve never taken any notes as I’ve thought ‘the doctor knows best’... but opinion has began to vary from one GP to another. Thanks for posting!

Treepie profile image
Treepie in reply toCheechy

What you need with the ranges in brackets ( as labs use different ranges) are : TSH,FT4 ,FT3 antibodies, ferritin,folate,D3 and B12.

You may find not nany of these have been tested.

Look at Thyroid UK website for details.

Cheechy profile image
Cheechy in reply toTreepie

Thank you, I will note this down and see what response comes from my GP. It’s a locum this time round- so no accountability from previous advice given and perhaps an opportunity to have more detailed blood work done. 👨‍⚕️

Treepie profile image
Treepie in reply toCheechy

To get all you need you will probably need to use private testing.Many on here do.Gps rely mostly on TSH and it is not sufficient

Cheechy profile image
Cheechy in reply toTreepie

Mmmmm, well that’s not good is it? Now I know that it’s a more widespread complaint than I’d realised I will certainly be making grounds to have a proper assessment..Or at least give it my best shot. If I have to go private so be it.. but surely there’s a duty of care attached here!! 😠

Treepie profile image
Treepie in reply toCheechy

There is also lack of detailed knowledge and cost.Once diagnosed even if GPs ask for FT4 and FT3 to be tested they may not do it.

Treepie profile image
Treepie in reply toCheechy

Also look at Thyroid Patient Advocay site and scroll down for the cartoon “ The holy miracle infallible TSH test”

Cheechy profile image
Cheechy in reply toTreepie

Thanks, I most certainly will... need a cat nap 😴 now. Clear the mind a little before attempting shopping for sprouts... and yet I hear too many of them can affect your goitre. Oh and can I ask... how would I know if I have Hashimoto.. or is it one and the same? 🎅

Treepie profile image
Treepie in reply toCheechy

Not exactly the same.The vast majority of hypothyroid folk have Hashimotos or autoimmune thyroiditis as GPS prefer.

There are two antibody tests, which I can never remember but will be on ThyroidUK site.Either one may be elevated and indicate Hashimotos but I gather you may still have it even if they are not elevated.The treatment is the same regardless but going gluten free is supposed to help the vast majority with Hashimotos.

Antibodies may fluctuate and cause flares that may lower TSH for a while leading to docs wanting to reduce Levo.Another reason to have more than justTSH tested.

greygoose profile image
greygoose in reply toCheechy

It's not true about the sprouts. You wouldn't be able to eat enough to cause a goitre!

The Hashi's antibody tests are TPO antibodies and Tg antibodies. But, the NHS will only do TPOab, if that. :(

Cheechy profile image
Cheechy in reply togreygoose

So I went to my doc and he checked back on my bloods from end of September... including b12 and said everything was within levels. I didn’t have the courage to ask for print out.. as I’m a big softie when it comes to things like that! Anyhoo - after a quick consultation with another doctor and from examining my neck.. which popped out on Christmas Eve .. way before the sprouts ! I’m to be sent for an ultra sound and to be retested at end of Feb. He did say that there was only so much primary care could do for me...and depending on the results from next test he might be able to refer me to a specialist. I’m not holding my breath - as from what I’ve read here..there’s slim chance of that happening. This doctor seemed to be well versed in thyroid health - so I didn’t want to question his judgement.. but apparently my brain is sending all the right signals..it’s my thyroid that’s not responding. The talk is to up my dose soon and I’ve been offered iron tablets as I’m slightly low.. but I declined as I want to see if my diet can improve my iron.

All comments gratefully accepted. Should I take the iron tablets and should I be concerned I’ve to go for a scan? Funnily enough I feel right as rain today.. apart from neck ache 😖

greygoose profile image
greygoose in reply toCheechy

How were you planning to raise your iron with diet? Are you going to eat liver? Liver once a week is the best way to do it, I believe.

So, every thing was 'in-range'? My reply to that would be 'so what?' It's not just being 'in-range' that is important, it's where in the range it is. It has to be in the right place. But, GPs are as bad at interpreting blood test results as they are at... a lot of other things! And, that's one of the reasons you need to get a print-out of your results and ranges. It is your legal right to have it, you know. You're not asking for favours. Ring reception and ask them to print the results out for you - now you've seen the doctor, there's no reason why they shouldn't. Say you'll pick them up at their convenience.

He did say that there was only so much primary care could do for me

I imagine that he's referring to the fact that he cannot prescribe T3, only an endo can do that. Which, suggests to me - although I might be reading too much into it - that your FT3 is low (if they've even tested it!).

but apparently my brain is sending all the right signals

I imagine he's talking about the TSH, and it would sound as if it's high! lol Oh, they do like to blind you with science! Or, perhaps he doesn't even know that the TSH is the signal, and it comes from the pituitary. Who knows! And, yes, it would be your thyroid at fault because, for whatever reason, it can't respond to the TSH. That's called Primary Hypo.

No, I don't think you should be concerned that you're being sent for a scan. That should be routine - although it often isn't. If they thought you'd broken a bone, they'd give you an xray, wouldn't they? Same thing. :)

greygoose profile image
greygoose in reply toCheechy

I'm afraid doctor rarely knows best, actually. They all tow the Big Pharma party-line, which says that you should prescribe as many drugs as possible, without ever getting to the root cause. But, with thyroid it's even worse, because the policy is to deny anyone has a problem for as long as you possibly can, then just treat every symptom as if it were a separate illness!

Best not to take notes, anyway, mistakes can be made. Ask for a print-out of your results. If you live in the UK it is your legal right to have one. Doctors do not understand thyroid, and are not very good at interpreting blood test results. Therefore, one should always check! :)

Cheechy profile image
Cheechy in reply togreygoose

Right, good advice.. ask for print out! And you’re right also on the fact I have been fobbed off for a while. I’ve just turned 50-although 35 in my body and mind - and not going to lie down to this!

greygoose profile image
greygoose in reply toCheechy

Good for you! :)

JAmanda profile image
JAmanda

Hi, I have to say I don’t think there is help out there - perhaps becauseof a lack of research or the enormous variations with how hypothyroidism presents. I’m thinking this forum is about as good as it gets but would like to get a book on it. Other than that I’m self experimenting and dosing. I started levo in June and increased it bit by bit to 75. Saw Endo in Oct and numbers were ‘perfect’ - both Endo and I agreed, looking at ranges and advice here. But this week I’ve been dying of tiredness, my feet so sore I cant sleep, shoulders and neck stiff etc. But after 2 nights of taking 100mcg and I’m feeling better. Guess it’s a hashimotos flare up - from what I’ve read here - may go back to 75 in a couple of days and see how I feel then - I’ll just keep experimenting on and on! My view is you can only take more meds and see if you feel better. The other option is the diet approach which I don’t fancy - and I think I’m just replacing the thyroid hormone I lack. Anyway, I hear you and good luck!

Cheechy profile image
Cheechy in reply toJAmanda

Thanks for your post..It’s comforting to know it’s not all in my head and it could potentially still be symptomatic of the thyroid condition. Sometimes I feel my head is about to fall off, and I’m Scottish, so quite hardy!

JAmanda profile image
JAmanda

Yeah I’m pretty hardy - lived in Glasgow for a year doing a masters in Psychology - so it makes me cross and sad to read so many here given antidepressants for their ‘anxiety’ when they say they’re not depressed and aren’t anxious. It’s not in my head (well everything is in your head as it’s how you perceive things) - it is everything physical for me from pain through exhaustion to zero libido. When I get the meds right, I’m a new woman.

As to what causes it to begin with and the ups and downs, maybe it’s stress, exhaustion, diet (I drank some milk last week and think that prompted my latest episode but I’ll see through trial and error) or something else I don’t know. I’ll keep looking for info and try and work it out for myself - like others here seem to have done. Regards.

Cheechy profile image
Cheechy in reply toJAmanda

Interesting that you should say that... I’ve since been advised to take anti-depressants due to all of a sudden not being able to cope with the demands of my job and having bouts of anxiety...’working under pressure’ is what drives me so I found this very frustrating and unfathomable. But yes, it’s still all new to me and to be honest - rather overwhelming, however, slowly but surely I’m starting to put the pieces together!🙂

in reply toCheechy

Anxiety and "Depression" (is it true depression???) are signs of hypothyroidism. I wasn't all that bad when finally given Levo, (still "Subclinical") but, at worst, I would sit for hours, with hardly the energy to get up and make a cuppa. I couldn't concentrate enough to read or watch a film or even think any interesting or pleasant thoughts. The lethargy was almost depressing in itself, and incredibly boring, just waiting to get tired enough to go to bed.

in reply to

P.S. I'm almost sure that antidepressants make hypothyroid effects worse, not better. Don't take them!

I've also read (on here or on a link someone posted) that some deeply depressed patients with no apparent thyroid problem actually improve when given T3!

Cheechy profile image
Cheechy in reply to

Oh who knows... I don’t feel depressed.. but then depressed people often don’t. I think it’s a culmination of my thyroid being under-active, wrong diet.. not necessarily poor and a stressful lifestyle. So... if I win the lotto, (need to play it first) and move to a warm country to swim in the sea every day and eat a Mediterranean diet.. I’ll be right as rain? I have every faith I’ll start to feel better soon... fore armed is well equipped and I’m going to push my GP to support me more. Will keep you posted on that front 🏝 ☀️

alchemilla12 profile image
alchemilla12 in reply toJAmanda

Im slightly confused by you saying you dont fancy going down the diet route and yet you noted that " drinking milk possibly caused your latest episode and are going to see through trial and error "

JAmanda profile image
JAmanda in reply toalchemilla12

I just noticed the milk thing (but it’s just a theory and it could have been a different cause) so I’ll see if the increase in levo works, and if not will totally remove milk. I just try to do one thing at a time.

Cica77 profile image
Cica77

JAmanda - how are you self dosing? All I get is, "You're in normal range, we can't increase dose." TSH 3.7 in last test but I have that 'coming down with something' feeling every day.

in reply toCica77

I still felt hypo when my TSH was just under 3! Thankfully I saw a pretty enlightened nurse (haven't seen a doctor for ages, though have spoken to one over the phone a couple of times when first diagnosed) who agreed to up my thyroxine on the basis of how I felt. I made a list of my symptoms and how they affected my life and there was no problem. But often one has to push for results. The other nurse I also saw just gave a nod of satisfaction because the TSH was "Within range". Often that is all they look at

Cheechy profile image
Cheechy in reply to

Another really good idea... keep a note of symptoms and how you’re affected..the thought of hitting a slump or that metaphoric brick wall while having to make rather important safeguarding decisions fill me with dread! I’m coping at the moment... Netflix, electric blanket and Diet Coke are my best friends..but financially I need to return to work soon!! (I’m not off work due to my condition btw.. I’ve worked full time for years and coped..or am I just thinking I was coping) 🤔

in reply toCheechy

What I dread is talking to a medic on the phone and being unable to make much sense because of the brain fog. Though thankfully that only happened at the beginning, when I was trying to explain my symptoms to a very abrupt doctor who thought he had heard all he needed to and refused to listen any more. At least he did send me for another blood test and a chest X-ray which finally resulted in treatment.

Cheechy profile image
Cheechy in reply to

Ha! that’s what I’ve been thinking about all the info I’m trying to absorb before my appointment on Friday. I’m hoping that when I ask for a printout if the test my doc will explain things in more detail. If not, I now know there’s plenty of support on this site.. but ultimately it’s up to me to find a way to really understand it in a way it registers with me. 🤞

JAmanda profile image
JAmanda in reply toCica77

I guess I have a good doctor as I tell them my symptoms and suggest trying a higher dose and they reluctantly agree. Possibly because it’s cheaper than sending me for mri for back pain and physio for shoulder and headaches. That said, my docs don’t know I’m now on 100 (I had extra) if it consistently improves me symptoms I’ll tell them and ask for 100 at next prescription. If it doesn’t really make much difference, I won’t mention it.

One can’t go to the doc every time ones symptoms change - and I’m sick of saying “my feet are so sore at night I can’t sleep” and “my buttocks are in agony I can’t sit down without doing series of stretches like a rugby player”!!! I sound insane. So, so far, each increase in meds has helped - my doc listens to that as otherwise they’ve no idea what to say to all these ridiculous complaints! 🤪

JAmanda profile image
JAmanda in reply toCica77

I printed out this and gave this to my doctor. Look especially under the heading Thyroxine Replacement Therapy in Primary Hypothyroidism.

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

JAmanda profile image
JAmanda in reply toJAmanda

Not sure why link above doesn’t work - think this one does. pathology.leedsth.nhs.uk/pa...

SlowDragon profile image
SlowDragonAdministrator in reply toCica77

Cica77

How much Levothyroxine are you currently taking?

On Levothyroxine the aim is to increase dose slowly in 25mcg steps until TSH is around one and FT4 in top third of range

Essential to test vitamin D, folate, ferritin and B12 plus both TPO and TG antibodies

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be under 1.5 when on Levothyroxine to be adequately treated

sps.nhs.uk/wp-content/uploa...

Over 90,000 members on here, shows just how inadequate current treatment is

A TSH of 3.7 is far, far too high

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take 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)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Cica77 profile image
Cica77 in reply toSlowDragon

Was a case of computer says no with my doctor. It's in normal range (at 3.7) so her hands are tied she said. Other levels and vits were actually ok except a bit low on vit d and calcium so taking supplements. I need to go back a persist I think. I will after Christmas as need to be well enough to go back to work.

SlowDragon profile image
SlowDragonAdministrator in reply toCica77

Print this out and take in to your GP and highlight the clear paragraph (on page 12) where it says TSH should be under 1.5 when just on Levothyroxine to be adequately treated

sps.nhs.uk/wp-content/uploa...

Ask for 25mcg dose increase in Levothyroxine, and blood retest in 6-8 weeks

If GP still refuses to increase then politely, but firmly insist on referral to an endocrinologist

Ideally have the list of endocrinologists from a Thyroid UK first, you would be prepared to see

Email Dionne after Jan 3rd

tukadmin@thyroiduk.org

Do not see a general local endocrinologist who is only a Diabetes specialist and often about as useful as a chocolate teapot

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Dionne at Thyroid UK email print it and highlight question 6 to show your doctor

LindaC profile image
LindaC

Please persist, persist again and persist further - try to find a 'reasonably good' private doctor/endo - don't take NO for an answer or down the line... Take Care and Be Well.

Seasons Greetings :-) xox

Cheechy profile image
Cheechy in reply toLindaC

Regards... and if I’ve learned anything from joining the forum just last night is that...it is real, it isn’t the same for every person and the GPS are just that... general practitioners and I need to be responsible for my own understanding of my condition!!!

Treepie profile image
Treepie in reply toCheechy

And endocrinologists are mainly diabetes experts and limited on thyroid issues.

Cheechy profile image
Cheechy in reply toTreepie

Jeepers!!! It’s a minefield/mindfield.. (that old debate). Well it seems there’s a distinct lack of support within the medical practice.. and perhaps a niche in the market for anyone with the right medical background 👨‍⚕️

LindaC profile image
LindaC in reply toCheechy

Sadly, many have no clue and those who do are often too scared to do anything for fear of being persecutedprosecuted. One excellent doctor [Dr P] - a Guy's qualified doctor, who also studied with one of the Hypothyroid Greats [Hertoghe family] + followed the work of Broda Barnes - himself hypothyroid, found it necessary to relinquish his medical license because he couldn't take the GMC... going after him.

Another Great Scot - Dr Gordon Skinner - a wiry, astute, took no nonsense from any of them guy, was hounded by the GMC... for doing no more than helping hundreds+ of patients get well. He finally died... people can only speculate that the obscene stress... There are others who get hauled before the GMC; not the weasels who have worn some people down for decades, sneering at ill patients.

Two excellent books: there are many more but these are great

Hypothyroidism Type 2: The Epidemic - Revised 2013 Ed Paperback – 4 Mar 2005

Your Guide to Metabolic Health1 Jun 2003

- by John C. Lowe

Cheechy profile image
Cheechy in reply toLindaC

I’m only just realising how uninformed I am. In the new year I will make it my mission to pick up on the guidance you’ve provided and the pointers from the other people posting. I’ll probably become obsessed with finding out more. My friend is also hypo and I’ve been sharing my learning. What a great site, and can finally see the light! Thank you 🙏

LindaC profile image
LindaC in reply toCheechy

Oh there are people on here who KNOW SO MUCH - they'll really help you - I'm not so good on the workaday mechanics :-)

The History of is a great starting point out of interest... how we got into this mess. I'm so interested in the fact that Hypothyroidism has such a rich history. Brave, forward thinking men who discovered so much back in the late 1800's - all of that was worse than destroyed [via those more interested in their egos and pay cheques than their patients - ignorance is no excuse!]; scorn has been poured all over it.

Our own guys are also worth a read: I've seen both of them and they are/were 'Patient Centred' treasures.

Your Thyroid and How to Keep it Healthy: The Great Thyroid Scandal and How to Survive it. 27 Jun 2006 by Barry Durrant-Peatfield

Diagnosis and Management of Hypothyroidism1 Oct 2003

by Gordon R B Skinner and Judith Davies

Good Luck, Take Care, Be Well and Seasons Greetings :-)

Cheechy profile image
Cheechy in reply toLindaC

As to you... ps I love Brussels sprouts.. am I destined to a life without them 🙂

LindaC profile image
LindaC in reply toCheechy

Perhaps, but just beware of who you're standing up or down wind from... :-)

Cheechy profile image
Cheechy in reply toLindaC

👌🙂

LindaC profile image
LindaC in reply toCheechy

😎🥂

Highland49 profile image
Highland49

As already mentioned, you definitely need to have a full check up of b12, ferritin, folate and vitamin D. I know when my vitamin D level has dropped that I'm more achy. Especially as you live in Scotland your levels could well be low. SeasideSusie has commented on posts before with lots of information about treating low vitamin D. There's also a vitamin D protocol. Ranges are set too low, so often missed by GPs and that's if they even check it.

The depression could actually be low b12, very common with under active thyroid. Have you had your antibodies tested? Levels under 550 can result in neurological symptoms, depression being one of them.

I hope you're feeling better soon and get some answers.

LizzieAFib profile image
LizzieAFib

Hello Cheechy. Sorry you’re feeling so under the weather. I would strongly suggest you look at your diet as well. Eat as healthily as possible - it really does make a difference, and avoid fluoride and soya.

Cheechy profile image
Cheechy in reply toLizzieAFib

Oooft, well that is a mountain to climb I know... but I know you are right. From the new year I will be looking at clean living... I have a little grand daughter and wasn’t to be around forever and not think that I could have done something earlier. Gutted that red wine might be an absorption. It’s my winter wine of choice.. 🍷

LizzieAFib profile image
LizzieAFib in reply toCheechy

Good for you - I can only speak from personal experience but it’s worth it.

Re red wine. I still have one small glass - my justification is it’s good for my heart :). And yes I do know that more recent research is questioning that bit still ... :)

Cheechy profile image
Cheechy in reply toLizzieAFib

I’m an advocate of everything in moderation.. but maybe that’s too generic now I’ve been diagnosed 🙂😠🙂

Eddie83 profile image
Eddie83

TSH is a poor diagnostic tool, and is virtually worthless to guide treatment. Some treatment suggestions:

1) You must fortify your nutritional status, and esp. iron, selenium, D3, folate, B12.

2) The T4-only full replacement dose is 1.5-1.7mcg/kg body weight. Multiply your weight in kgs by 1.7; how does that compare to your 100mcg dose of levo?

3) If you have a dose of levo which is close to the full-replacement dose and you don't feel well, adding in T3 is likely to be a big win. I've heard it said that about 20% of the population does better on T3+T4 (or even T3-only). The average doctor does not understand that there are patients who cannot do the T4->T3 conversion very well.

4) DON'T let your doctor beat you up about TSH! TSH is not how you guide treatment, you guide it with a combination of symptom reduction (feeling well), FT3, and FT4. I am on T3+T4, and don't feel well until my TSH is well below range. Currently my TSH=0.11.

Cheechy profile image
Cheechy in reply toEddie83

Thanks Eddie83, the more I learn the more I realise how much I don’t know. And it’s funny you should mention weight... my friend has been told she is borderline, and I often think, in regards to what exactly??? She is a larger lady so if we both had the same count for example would that not mean she would be more/likely?

You live your life with no ailments hardly then this one thing can take the feet from under you...and it’s years before you are able to start to deal with it. The only reason I did was that my sister insisted, that I insisted that they check my thyroid- and now it seems that this might not even be the full picture.

Onwards and upwards! Thanks for the helpful info! 🙏

Eddie83 profile image
Eddie83 in reply toCheechy

I only mentioned weight, in this case, because larger people need more hormone to be euthyroid. However, I assume you know by now that hypothyroidism has 300+ symptoms, and carrying around excessive weight is one of them. It's definitely mind-blowing to goto hypothyroidmom.com and read her post about the 300+ symptoms. You may even identify some issues you didn't even know were due to hypothyroid!

JAmanda profile image
JAmanda

What was your thinking about antacids by the way?

Cheechy profile image
Cheechy in reply toJAmanda

Apparently from my source with the World Wide Web, when taking levothyroxine -Antacids such as Tums should be avoided as can absorb the medication. Also can high amounts of sprouts and broccoli and red wine. I was thinking of going vegetarian in the new year, and yes there are other vegetables... but I may have to think my strategy.. too much conflict right now might confuse me! So I’ll keep on the red meat for a while...🙂

SlowDragon profile image
SlowDragonAdministrator

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018

Find out EXACTLY what has been tested recently

And more importantly what hasn't been tested

Far too often only a TSH,

No testing of FT3 or FT4 or thyroid antibodies- all essential

Frequently vitamins at rock bottom of range - yet patient told results is "normal "

We need optimal vitamins when on Levothyroxine

Come back with new post once you get results and ranges. Strongly suggest you get these BEFORE next consultation with GP

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