What if you don’t feel better? : Good morning... - Thyroid UK

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What if you don’t feel better?

Tired2022 profile image
61 Replies

Good morning.

I’ve had some great advice on here before and hoping for more, please.

I’m having a pity party and need a plan to get back on track.

I started levothyroxine just over 2 years ago. For two years prior to that I was increasingly unwell but it took that long to convince GP to take me seriously and do blood test.

I think I have mild cognitive impairment. I can’t do the type of work I used to. Will that come back?

I feel I have been misled by health professionals. I have done the blood tests etc. Each time l ask here, then pass on your advice to GP who is always happy to do as you suggest, and they do blood tests and prescribe. Currently Vit D and folic acid. I feel improved for a while then go downhill. It’s a cycle. I tried to explain this. They said there is nothing sinister underlying.

I do take a multivitamin. I have explained this. I have also tried single vitamins. GP said not to do this. I have given up gluten.

Due to my current stats, I am not able to do all I should about learning about the vitamins.

This week I feel I will have to give up my professional job and find another type of work. I don’t know what would be suitable.

Prior to this I was a professional who powers through and never takes time off.

I am not coping with my home/garden/admin either. I tried taking time off and that’s better while I’m off but as soon as I go back to work it’s the same again.

Sorry for long moan. Very grateful for advice/suggestions. Thank you.

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61 Replies
Dahliasanddaisies profile image
Dahliasanddaisies

Ah I feel your pain. 18 months on ever increasing doses of levo and feeling worse than ever. Have you had any advice on your last blood tests? Have you had a full panel done?

Tired2022 profile image
Tired2022 in reply toDahliasanddaisies

I’m so sorry to hear that. I hope you can feel better soon.

I had blood tests done a few months ago. First the GP said ‘it’s not surprising you feel like this with so much on your plate’. So I beg for blood tests. Asked on here what was needed. It came back low folate and low Vit D.

The thing is I felt like this last Dec and was put on v high dose of abit D for month. Then maintenance dose and I felt better for a while.

When my test came back low, I asked what I am supposed to do if I take the maintenance dose but it’s not maintaining? Why is it not? They just said nothing sinister underlying. Here is a bigger dose Vit D. Run along!

I already cannot manage what used to be my daily life activities and have no capacity to get to grips with this.

I want to know whether this is my life now and I need to adapt or whether I need to fight and do more to restore myself and how/what. I’m feeling very down today. Sorry.

Dahliasanddaisies profile image
Dahliasanddaisies in reply toTired2022

That's okay, I know exactly you feel. The best thing I did was take control myself. Get private (at home) blood tests and then supplement accordingly. Don't take the GPs word for you are fine! They told me my Ferritin wad fine at 22 (range starts at 21) and a million other things.

In terms of thyroid get yourself a full thyroid panel from somewhere like nedichecks or randox (offer on this weekend) so you know what your T4,T3, TSH are doing and then you can come back and ask for help with next steps. It sounds like you need to increase. What dose are you on?

Tired2022 profile image
Tired2022 in reply toDahliasanddaisies

Thank you

100 per day. I am 69kg.

I think I have not been taking it correctly though. I take it in the morning probably only 30 mins before breakfast.

She did my thyroid levels again. I’ll find them and post them. They are stable as memory serves. There are brief periods when I feel ok, but it seems so fragile and then something else is wrong. I guess that’s my thought. Is this the new normal? I will never feel well for long and now need to plan my life accordingly?

Dahliasanddaisies profile image
Dahliasanddaisies in reply toTired2022

I'm in the same boat and I think it's because I don't convert t4 to t3 very well. You need to have t3 checked so you know the levels as this is the most important hormone. Have you tried taking your levo at bedtime? As long as it's at least 2 hours after food and away from other supplements. Many members prefer this and then you can eat as soon as you wake up

Sparklingsunshine profile image
Sparklingsunshine in reply toTired2022

I think you need to get hold of actual results, not take GP's word for it. If you are anywhere in the range and the ranges are frequently very wide then Doctors will say you are fine.

They arent trained in nutrition or supplements and usually only prescribe measley doses for too short a time. I liken it to a bank account, if you only have £1 in an account its in range, ie not in the red but who wouldnt prefer to see £100 in there instead?

As hypos we need optimal amounts of ferritin, folate, vitamin D and B12, not just scraping along the bottom. Ditto your thyroid results. What your GP dismisses as fine and what they actually are can greatly vary. Also the NHS very often only tests TSH which is not adequate, we need TSH, FT4 and FT3 for a full picture.

You can sign up for the NHS app or request online medical record access via your surgery if you live in England. I think it might be different in other devolved nations like Wales though. And post your results so members can comment.

Tired2022 profile image
Tired2022

Thanks. That’s good advice. I’ll try at bedtime.

sparkly profile image
sparkly

I feel for you. I no longer work doing what I loved so much. I think mine is a mixture of things. The first one definitely perimenopause and now I'm post menopause, and secondly not being on optimal thyroid medication dose. I've had memory issues since I was 38, that was the start of things going wrong. I've had early onset dementia ruled out thankfully.You say you are not taking your t4 correctly, that can have a massive impact so definitely take an hour away from your morning cuppa and breakfast.

If you are in your 40's and not looked into perimenopause then I would read up.

Tired2022 profile image
Tired2022 in reply tosparkly

Thank you. I am sorry that you have had to give up the work you loved, I hope you have found something else that makes you fulfilled.

I have looked at some perimenopause/menopause information. I thought I was menopausal because of my symptoms before I had the thyroid diagnosis. Like I developed tennis elbow and joint pain as well as fatigue and brain fog, but these have all improved when I have been able to get the thyroid and vitamins back in range. When they come back, that's when I go to the GP again. I don't know how to unpick it or who to see about it.

I'm sure I could get HRT if I wanted, but it seemed better to optimise the thyroid and vitamins and then see what's left. However, this approach isn't really working for me at present.

sparkly profile image
sparkly in reply toTired2022

At 50 you are definitely in perimenopause. We all go through it, some like me really suffer, others breeze through with no issues. I strongly recommend you do a bit of research as memory problems can be an issue in peri/menopause and wouldn't like you to miss what could be easily resolved if that might be the issue

Tired2022 profile image
Tired2022 in reply tosparkly

I'm sorry if this is a stupid question, but I'm so overwhelmed. Menopause is very current and there is conflicting info everywhere. I had the FSH blood test done and it was

Serum follicle stimulating hormone level 5.1 IU/L; Adult Female FSH Reference Ranges:

follicular phase 3 - 12

mid-cycle 5 - 21

luteal phase 2 - 8

post-menopausal 26 - 135

I have a mirena coil which is meant to help with something.

HRT seems very trial and error. None HRT ways of managing the menopause seem trial and error. I honestly don't know where to start.

sparkly profile image
sparkly in reply toTired2022

Blood test will be irrelevant as you have the mirena fitted which release progestin so won't give a true reading. Also if the mirena stopped your periods then you might already be post menopause. Yes it is trial and error but as you already have the mirena fitted then this would be the progesterone side of your hrt. You'd only need to add estrogen. Just google about memory problems and peri/menopause.

greygoose profile image
greygoose

First of all, never ever take nutritional advice from a doctor. They know nothing about it. They don't learn about it in med school and it's not their job. But, as they think they know everything about everything - except whatever is wrong with you - they feel free to dish out advice like gurus.

Did you GP tell you to take the multi-vit? It really is the wrong thing to take. If it contains iodine it could be that that is making you feel unwell. And, if it contains iron, that will block absorption of most of the other ingredients. And so many other things wrong with multis, it's just throwing money down the drain.

Currently Vit D and folic acid. I feel improved for a while then go downhill.

Well, that does't surprise me. Taking Vit D without magnesium is going to deplete your magnesium and make you feel worse. Nothing is going to help unless you take the cofactors with it. Magnesium is needed to convert vit D to the form that your body can use. So, you would have been ok on it until the magnesium ran out. What's more, low magnesium will make you feel bad. You also need to take vit K2-MK7 with vit D.

Folic acid is synthetic folate and not well absorbed by the body. You would do better with methylfolate.

Falate works with B12 so have you had your B12 tested? What were the results? In fact, all the Bs work together so just taking one isolated B vit is not going to do much for you. You'd be better off with a B complex.

They said there is nothing sinister underlying.

Well, that's a good get out for doing nothing! I don't suppose there is anything sinister but there has to be something wrong. And it's supposed to be their job to find out what and fix it.

Your underlying problem, as I see it, is that you're hypo and never been properly tested, so they have no idea what is actually wrong. Just testing TSH tells you nothing at all. But, being hypo will cause low stomach acid, meaning you have trouble digesting your food and absorbing nutrients.

So they could:

a) test your FT4 at least, ideally FT3 as well

b) get you on the correct dose so that you're no-longer hypo

c) mug up on how to effectively treat nutritional deficiencies

d) prescribe the correct form on nutrients.

Although, to be honest, you're probably better off dealing with the last two points yourself because they're never going to learb.

And you'd probably do better if you got a full thyroid panel done privately, because they're never going to do that, either. You want:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin.

Zinc as well if possible;

I feel improved for a while then go downhill. It’s a cycle.

Is this true with levo, too? If so, that's perfectly normal, and it just means you are ready for the next increase in dose.

You don't have to learn everything about vitamins by heart. That is not the most important. The most important is knowing where to find answers when you need them. So, when you have questions about nutrition, ask here and then you will always have the answers to hand in your profile:

healthunlocked.com/user/Tir...

:)

Tired2022 profile image
Tired2022 in reply togreygoose

Thanks so much. I have put my NHS blood results below.

I am needle phobic and I have had EMDR to be able to do the blood tests in clinic. I can't imagine doing a DIY blood test. Getting blood tests done are a massive deal for me and if I have them privately, I won't be able to interpret the results. Do you think a private GP would be a good way forward?

greygoose profile image
greygoose in reply toTired2022

Depends on the private GP. They don't necessarily know any more than and NHS GP.

You don't have to take your own blood for a private test. There are places you can go to get it taken for you. And it doesn't matter if you can't interpret the results. We can do it for you.

So, are you still on a gluten-free diet? Is it helping? Never mind what was what in your old life, it's what's happening now that counts.

I think you're over complicating things with the single supplements. There are just three things to remember:

- Most supplements should be taken at least two hours away from thyroid hormone

- Iron, calcium, magnesium and vit D should be taken at least four hours away from thyroid hormone

- Iron should be taken at least two hours away from everything else except vit C (because of its blocking action), and it is vital to take vit C with iron to help with absorption.

Apart from that, you can take what you like with what you like. But when you take a multi-vit, everything is taken together, so how is that supposed to help? You don't absorb anything much except iron. And if it contains calcium, the iron and the calcium will bind together and you won't absorb the iron, either!

But, make it simple for yourself. From your results below I see that your folate is verylow, and your B12 is high. Your B12 is high because your folate is low - as I said, they work together. I would suggest you take a B complex with all the Bs in it PLUS a methylfolate supplement. You can take that at the same time as your vit D and magnesium - do you have a form of vit D supplement that includes vit K2? If not, you'll have to get the K2 separately. Is your vit D in a pill or an oil-filled capsule?

So, just concentrate on those for the time being, get those levels up. Your ferritin looks good, but we also need to see and inflammation marker - CRP or something. Because high levels of inflammation will give you a false high ferritin result.

greygoose profile image
greygoose in reply togreygoose

So, the September results are pretty useless as far as thyroid goes. Just knowing that your TSH is 1.03 tells you nothing. So, you're completely in the dark about your thyroid status, but 100 mcg levo is not a high dose, you probably need another increase.

Do you realise you have Hashi's? Do you know what that involves?

As for the GP that laughed at you! You should have reported him to the practice manager for unprofessional behaviour. Doctors are not supposed to laugh at their patients! That is so rude!!!

But, no, I doubt if you have dementia, you just have idiot doctors who aren't treating your hypo correctly. As you have Hashi's, you are probably a poor converter, so your FT3 is probably low. The brain needs lots of T3, and without it, all sorts of brain-related symptoms will appear. But as the FT3 is rarely tested, doctors wouldn't know about that. Which is why we have to get proactive. It doesn't matter that you don't understand your blood test results - why should you? It's not your job. And those whose job it is know nothing about it. But we know, and we're always here to help you. You just have to ask. :)

Tired2022 profile image
Tired2022 in reply togreygoose

Thank you. I am so grateful for your time.

I understand that I have hashi's and I have read about it, but I don't think I have understood what it means for me. I understand it is progressive, but the take home message seems to be "take the levo and all will be well".

Are we saying that as it is progressive, I will feel ok, then it will progress and I will feel unwell and need more meds and that will be the cycle? So I will never feel consistently well and I will never get back to baseline? I don't think I had understood that til just now. So in that case, it's about adapting. I won't get back to where I was. And to do the blood tests and take the vitamins to optimise as much as possible.

Now I think about it, my Dad took early retirement after his diagnosis and my sister who has had it for decades, does has a very limited life (she struggles with her weight and is very tired and grumpy all the time). Ok. Well I will be able to direct my efforts in the correct direction now.

I can't tell you how helpful that has been. I'm very grateful. Thank you.

greygoose profile image
greygoose in reply toTired2022

Well, that wasn't quite what I meant, no.

Hashi's, as you probably know, is an autoimmune disease where the immune system repeatedly attacks the thyroid, mistaking it for the enemy.

Every time it attacks, the dying cells release their stock of hormone into the blood, causing levels to rise - to a greater or lesser degree - and therefore the TSH reduces. Doctors often mistake this for hyperthyroidism, but it's only temporary. Eventually, as the excess hormone is used up or excreted, the hormone levels will go down and the TSH will rise.

This, of course, does make finding the right dose difficult. And doctors make it more difficult by not understanding what is happening. But, eventually, the thyroid will be completely out of action and levels will stabilise. At that point, and knowledgeable doctor will be able to go about finding the right dose for you - and the right treatment; The problem is, not so much the disease itself but doctors' lack of knowledge or understanding. The consistantly under-medicated their patients because of their deep-rooted fear of hormones. And, they are absolutely terrified of T3, so don't like or want to prescribe it.

But, if you can over-come these medically-induced obstacles, there's no reason why you shouldn't be back to your old self. Perhaps not 100%, but at least 95. The thing is never to give up. Learn as much as you can and insist on the right treatment. It is doable. Having Hashi's is not a death sentence if you know how to treat it. :)

Tired2022 profile image
Tired2022 in reply togreygoose

Thank you. That's more positive. The private blood test seems like the priority, then the vitamins. Apologies. I'm having a full-on pity party today!

Tired2022 profile image
Tired2022 in reply togreygoose

I am so grateful for your advice. That is so easy to follow.

Luckily I have been taking Well Woman 50 which does not seem to contain iodine, but only has 16 NRV of magnesium.

The vitamin D is D3 4000iu in a pill OTC as advised by GP (they don't prescribe as I am "borderline".

I have been taking a soluble energy release vitamin as well which has B1, 2, 6 , 12 and other things.

I think it's best to stop taking all of those and follow what you have written.

I have had tests for inflammation.

Sept 2024

Erythrocyte sedimentation rate 12 mm/hr [3.0 - 9.0]; Above high reference limit

April 2023

Serum C reactive protein level < 5 mg/L [< 5.0]

March 2023

Erythrocyte sedimentation rate 12 mm/hr [3.0 - 9.0]; Above high reference limit

Thank you so much.

greygoose profile image
greygoose in reply toTired2022

<5? How much < than 5? I do wish the wouldn't do that. It might be 0 or it might be 4.9, both are below 5, but the former would be a much better result than the latter. So, that doesn't tell us much.

Don't like the sound of your 'energy' supplement. Sounds like Barrocca and that's rubbish! It won't give you any energy if your thyroid hormones are low. That's not how it works. So, yes, best to stop that.

I'm not well up on vit D, so I would suggest your write a new post giving your dose, and the blood test result and ask if you're taking enough, because as I said, you can't trust doctors where nutrition is concerned.

Tired2022 profile image
Tired2022 in reply togreygoose

Yes. I've got a couple of those. That's all it says <5. The ESR does come back raised though.

I have started a new thread about Vit D. Thanks again for all your advice.

greygoose profile image
greygoose in reply toTired2022

You're very welcome. :)

Tina_Maria profile image
Tina_Maria in reply toTired2022

A high erythrocyte sedimentation rate could actually indicate an inflammation, or it highlights an autoimmune condition / thyroid disease. So if you have a low grade inflammation present, it could mean that your ferritin level is falsely elevated.

Have you done an iron panel or did your GP do it? Would be good to see where your iron levels actually are, as if they are low, this could contribute to you feeling tired and low iron can prevent your body from utilising your thyroid hormones properly, which will also contribute to your tiredness.

It is a lot to consider, but tackle it one step at a time and with the right supplementations, you will be getting better soon!

Tired2022 profile image
Tired2022

Thank you. That's so helpful. I will write my blood results below.

The main problem I have is that before my diagnosis, I lived a healthy lifestyle and had no health problems, naturally slim. I did not realise how much I took it for granted. I never took vitamins as I felt you should get them from your diet. Never needed weight loss diet and never believed in "faddy" gluten free diets unless you were celiac or something. So I'm on a massive learning curve when my brain and concentration won't work.

I was converted when a gluten free diet unexpectedly cleared my brain fog (but still not back to baseline). I did try taking single vitamins, but it got so complicated. Some x hours before food, some x hours after food, some should be taken together, some should be taken apart. I gave up and took the multivitamin.

In view of other causes, I am 50. I am from a family who still had babies when in their 40s so when they did the blood test for menopause hormones, I came out as not menopausal. I think all my issues started when I had my first mirena coil in Oct 2019. Things got worse and worse from there.

When I had my bloods taken in Feb 2024, I was on 75mcg Levo and this was increased to 100 in April 2024.

My most recent blood tests from September 2024 are:

Serum TSH level 1.03 mIU/L [0.27 - 4.2]

Serum vitamin B12 level 606 ng/L [197.0 - 771.0]

Serum folate level 2.4 ng/mL [3.0 - 20.0]; Below low reference limit

Total 250H Vitamin D 44.2 nmol/L; 25OH Vitamin D 25-50 nmol/L is consistent with insufficiency.

I see that they didn't do T4, this time although I thought they did.

The GP did do a lot of blood tests to be fair for Diabetes, Kidney Function, Swelling. I'm not sure if it is helpful to share these or which ones.

In Feb 2024, I got these:

Serum TSH level 2.20 mIU/L [0.27 - 4.2]

Serum free T4 level 16.0 pmol/L [11.9 - 21.6]

Serum vitamin B12 level 779 ng/L [197.0 - 771.0]; Above high reference limit

Serum folate level 7.3 ng/mL [3.0 - 20.0]

Total 250H Vitamin D 47.8 nmol/L; 25OH Vitamin D 25-50 nmol/L is consistent with insufficiency.

In February I had not realised that the Vit D was still under 50 as they said that was fine. I just realised that now.

My results in December 2022 are:

Serum TSH level 0.47 mIU/L [0.27 - 4.2]

Serum thyroid peroxidase antibody concentration 930 IU/mL; Thyroid (TPO) Ab Ranges

Negative < 25 IU/mL

Equivocal 25 - 35 IU/mL

Positive > 35 IU/mL

Serum ferritin level 245 ng/mL [13.0 - 150.0]; Above high reference limit

B12/Folate Haematinic assays

Serum vitamin B12 level 747 ng/L [197.0 - 771.0]

Serum folate level 3.1 ng/mL [3.0 - 20.0]

Total 250H Vitamin D 18.5 nmol/L; 25OH Vitamin D <25 nmol/L is consistent with deficiency.

I started Levo 75 in Nov 2022.

I'm really sorry. I just look at these and get bamboozled because I can see if something is in range or not, but I don't know what any of it actually means or how it links together.

In 2022, I told the GP that I thought I had dementia and he literally laughed at me. I had reminders on my phone throughout the day like "7am have breakfast" or I couldn't get off the sofa.

I don't have any reminders on my phone now but I'm holding on to my job with the tips of my fingernails and so I need to find some kind of solution (to get better or to look for other work).

Thank you if you have read this far and I am so grateful for all the support. The NHS web page just seems to say take the levo and carry on with your old life as if nothing has happened.

Thank you

Sparklingsunshine profile image
Sparklingsunshine in reply toTired2022

The NHS and tbh other health care systems dont view hypo as serious,because for them its not. They dole out these little white pills ( albeit sometimes begrudgingly), give us a blood test a few weeks or months later and once our TSH is in range then rejoice!

You are healed. If you go back complaining of weight gain, fatigue, brain fog, depression, anxiety or just not feeling yourself they dismiss us as hypochondriacs, or tell us we need antidepressants. Or blame our age. It could never be because for some Levothyroxine isnt working or they arent on enough of it, or their nutrients are low.

And unfortunately there must be many hypo patients out there wondering why, in spite of being on Levo and told by their GP that their results are " fine", they still feel like poo. And many will just resign themselves to feeling that way. Its not until they join forums like this that they realise it doesnt have to be like that.

Tired2022 profile image
Tired2022 in reply toSparklingsunshine

Thank you. I really hope it doesn't have to be like this.

They offered me sertraline at first (I wasn't depressed) and I had to ASK for a blood test for thyroid (it runs in my family and the penny dropped for me one day). Then it took me several months to actually get the blood test done as I was so bad with blood tests. I will do all the blood tests now, if it will get it sorted out.

Sparklingsunshine profile image
Sparklingsunshine in reply toTired2022

Just as heads up doctors get extra funding points for prescribing antidepressants. And as there is no such thing as an NHS GP anymore ( they are private practitioners contracted by the NHS to provide GP services)

Most are partners in their practice. So the more they diagnose and prescribe medication for blood pressure, diabetes, asthma, cholesterol and MH the more revenue they receive. Depression attracts a lot of points, hypothyroid, barely any. Its a disgrace and to my mind completely unethical but it is the reality of the modern NHS.

Tired2022 profile image
Tired2022 in reply toSparklingsunshine

I did not know that. I am quite shocked.

Sparklingsunshine profile image
Sparklingsunshine in reply toTired2022

I think a lot of us are. Its called the Quality of Outcomes Framework or QOF.

Tired2022 profile image
Tired2022

Thank you very much. I hope you are recovered now and your QoL is improving xx

Obsdian profile image
Obsdian

I feel much the same. It's been just over a year for me. I 've been off work 8 months due to illness. I can't visual being able to go back. Currently waiting on my work to come to the conclusion that they need to dismiss me due to ill health. I am currently on universal credit and it's too iffy and no guarantees on whether or not resigning would give me sanctions.

In my case, I have discovered it's not always just thyroid causing issues. I have dysautonomia since April and I have resigned myself to the idea that one day I will probably get diagnosed with chronic fatigue syndrome too (will be getting a second referral t investigate that as first ended up rejected due to new symptoms that turned out to be dysautonomia and a touch thyroid).

Tired2022 profile image
Tired2022 in reply toObsdian

I'm sorry to hear that. It's so stressful to be ill and to be worried about money. I have not heard of dyautonomia. I googled and it sounds very painful. I am sorry for that . I hope that they will be able to find something to help you. xxx

Tired2022 profile image
Tired2022

Thanks so much. I did show my friend my results at that time and she said the same as you. The GP basically thinks I should lay off google and be happy when my results are in range.

Sparklingsunshine profile image
Sparklingsunshine in reply toTired2022

Yes they love a compliant uninformed patient. Makes their life easier.

Tired2022 profile image
Tired2022 in reply toSparklingsunshine

It's soul destroying.

Tired2022 profile image
Tired2022

Yes. That test is a couple years old now. There are several things I want to ask, so I will make a list and woman up. It's genetic though, I think. Having had a quick google and there's no family history. Would there be any other reason for it?

Obsdian profile image
Obsdian

I was thinking that way for some time, but have gotten to a point where having that label would help me be more understood and open some more doors.

Lottyplum profile image
Lottyplum in reply toObsdian

Do you read up on Dr Sarah Myhill as she has written much on CFS. She has an excellent website. She was the key to our daughter’s issues after contracting hpylori as a 14 year old and it took NHS 2 years to test her for it as they thought she was too young! Well you know what thought did, followed a muck cart and thought it was a wedding! Just one appointment turned the situation around! Worth every penny!

Obsdian profile image
Obsdian in reply toLottyplum

I have only read some medical sites. I will check this out, thank you.

Lottyplum profile image
Lottyplum in reply toObsdian

Dr Myhill also writes re thyroid issues and has, I believe, had articles on Thyroid U.K. she has a lot of research on her website. Before I retired I worked with a local CFS group re setting them up as a charity and getting funding in place, so to help them with funding bids I had to learn a lot about CFS/fibromyalgia and the many problems surrounding those health Issues - including many GPs still thinking it is psychosomatic! It was from this group I learned about Dr Sarah Myhill and she was a Godsend! Trust you find her information helpful to your situation.

Obsdian profile image
Obsdian

My mind has only begun to change on it as I have reached a point of finally being believed with thyroid issues, and the dysautonomia diagnosis has completely changed how they weren't listening to me. Both the thyroid and dysautonomia do cause me fatigue and other symptoms.

But outside of the GP/hospital, I get zero understanding until I mention the chronic fatigue and soon a second try at a referral... Then it clicks that what I am talking about it real. I get quite worn out not being believed. It's especially annoying finally gaining that with doctors and having a few diagnosis and then no one else believes it.

Obsdian profile image
Obsdian

I think my local cfs clinic must be diligent on ruling stuff out first that's why I got rejected the first time around. I will certainly have questions along these lines if I ever get to the appointment stage.

sparkly profile image
sparkly

I know this only too well, I learnt the hard way. I had been stable on my t3 for a couple of years then all of a sudden it wasn't working and i was so ill i couldn't function and struggld walking. Upping, downing or stopping T3 mafe no difference. My nhs endo didn't have any answers nor any gp's. I was blaming my thyroid when it turned out I was perimenopause. Having no knowledge of what being perimenopause made you feel and because I wasn't having hot flushes then no one picked up on it. If I hadn't made an appointment with a private endocrinologist who happened to be an amazing menopause specialist then I possibly might not be here today. She knew instantly perimenopause was my issue and this in turn was causing issues taking me T3. 18 months before I was feeling human again. I'm a big advocate for hrt and especially testosterone, that was something else I blamed all the issues on thyroid. Fatigue, brain fog, aches and pains and feeling low. 3 weeks after starting testosterone it was unreal. A lot has changed for the good since then.

It also goes the other way. I often read ladies complaining about symptoms that they think are menopausal but are screaming thyroid.

SlowDragon profile image
SlowDragonAdministrator

First step is to improve low vitamin D and low folate

Then in 6-8 weeks time get FULL Thyroid and vitamin testing privately via Medichecks or Blue Horizon

Either at a local to you private clinic or a nurse to your house

100mcg is not a high dose of Levo

How much do you weigh in kilo

Guidelines on eventual dose likely to be needed is approximately 1.6mcg of levothyroxine per kilo of your weight per day

So if you weigh more than 62 kilo - or 9st 10lbs you are likely in need of dose increase in Levo

Testing

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tired2022 profile image
Tired2022 in reply toSlowDragon

Thank you. It's so great to have a plan. I weigh 69kg. I'm trying to lose weight. I weight 74kg when I started on this dose.

SlowDragon profile image
SlowDragonAdministrator in reply toTired2022

Well done on weight loss

SlowDragon profile image
SlowDragonAdministrator in reply toTired2022

69kg x 1.6mcg = 110mcg per day

Per week = 770mcg

So even if only SLIGHTLY under medicated…..it adds up

See what results show at private testing

Tired2022 profile image
Tired2022 in reply toSlowDragon

Thank you. I will get that done in 6 - 8 weeks as advised.

Tired2022 profile image
Tired2022

I don't think so. They did liver function tests in Sept 2024 and everything within range. Hopefully it's ok. I will get the ferratin done again. I've decided to get private tests in January to check the Vit D and Folate is improving so I will test the other things at the same time and see what happens. Thanks again

Lottyplum profile image
Lottyplum in reply toTired2022

After reading your questions and answers and your issue with blood tests, just to say that when our daughter did a Monitor My Health test it was like getting blood from a stone doing the finger prick test (literally) and she just ended up with sore fingers! so as Medichecks gives an option to have a blood draw (Superdrug), that could also be an option for you? Trust you get through the crapsicola you’re dealing with, including a duff GP where your thyroid is concerned, and come out the other side feeling human again. Unfortunately our NHS really isn’t fit for purpose any more and the GP surgery is run for their benefit, not necessarily yours! The knowledge here surpasses that of any GP I have ever had contact with in all the 40+ years since my TT! Trust we hear of your improvement in the months to come!

CallMeSunny profile image
CallMeSunny in reply toTired2022

Medicheck has 25% discount on all tests (as a “Black Friday” deal). Lola includes a phlebotomist to do your blood draw at home…plus lowish prices. Essential for any blood draw (to help phlebotomist to ‘extract’ the blood as it will flow better) is to drink loads of water 1-2 hours beforehand, keep yourself warm….including exercising hands & arms. Also see members’ advice about leaving off B vitamins including biotin for several days before the draw. Best of luck…you’ll get there!

Tired2022 profile image
Tired2022

I would just like to say how wonderful and well informed you all are and how much I appreciate it. Thank you so much.

Rapunzel profile image
Rapunzel

Acceptance.

I still struggle with this a little bit. I remember the old me racing around the City in my 4" Salvatore Ferragamo spikes, lugging A4 files in my oversized bags, and providing answers while all my synapses were firing.

I, too, had one of those jobs you're chatting about. Although I've now retired, I spent the last 14 years of my working life doing something rather niche, subsequent to my thyroid kicking off. I thoroughly enjoyed myself, and although on occasion I felt overwhelmed, I'm glad that I found something to do that made me still feel like a worthwhile person.

Essentially segueing from adult learning and development to public speaker, being more in control of my diary, choosing not to work with repulsive, strutting, sexist vermin ( very common in the City...and in my experience, these sh*ts are everywhere...) all this helped.

That's my thing to work on, for the rest of my life. Acceptance. Hypo? Hyper? It's nobody's fault, not even your own. Your body's let you down. More often than not, so will the medical profession. Accept all this, come and vent here. If you read some of the other posts, you'll soon realise that with the ineptitude of established medical 'wisdom', with this condition? You're on your own.

Thyroid UK and TPAUK are the shining lights. Treat what you're told at a GP surgery ( it's your age, it's not your thyroid, go away, you are in range, lose some weight and move about more...etc etc ) with scepticism, and you'll find the lived experience of those with thyroid conditions here. I am well (as I'll ever be...) because I've taken my thyroid health into my own hands, yet because of TUK and TPAUK, I've never felt alone.

Welcome to this Smörgåsbord of support and enlightenment.

Ownedbyamuddyspaniel profile image
Ownedbyamuddyspaniel in reply toRapunzel

Fab post, thank you from an absolute newbie 👏

Rapunzel profile image
Rapunzel in reply toOwnedbyamuddyspaniel

Welcome, muddy spaniel owner (you are their person, so it works both ways...)Continue with levo so far as you can; most of the contributors here have come a cropper on T4 (levo) alone, for one reason or another. But the fact remains that somewhere around 80% take a little pill(s) and get on with their lives. We are all hoping that you are one of the 80%...lots of info here to help, whatever your predicament.

jgelliss profile image
jgelliss

I was told the same by my surgeon as well. Trust me no Cancer of any kind is better. We should never have to know. Dr's ought to be mindful what they tell their patients.

Tired2022 profile image
Tired2022

That does make sense what you’re saying.

Hectorsmum2 profile image
Hectorsmum2

re cognative impairement. i was diagnosed with this some years ago but have been using a website called 'food for the brain'where you can get you memory and lifestyle tested for free then advice re vitamins and life styel changes needed to protect/ imrpove your brain. mine has imrpoved loads just by eating more fish. You might also be B12 deficient and it might be worth you posting on the PAS forum here. This is common with thyroidly people and effects memory.You might need injections even if bloods are normal. I would nt give up your job, go off sick if you can and spend some time getting better.

Tired2022 profile image
Tired2022 in reply toHectorsmum2

Thanks. I’ll look at that.

I left my permanent job two years ago, I’d had months of sick leave and thought the job was part of the problem (the thyroid test was after I’d left)

I’ve been doing agency work, taking short assignments with gaps. I don’t really have any option for sick leave.

I am literally unable to keep up with the expected workload so literally am getting more behind each day, I see no way to catch up and leaving seems to be the only option.

I am working on what sort of job I am reasonably capable of. I have a mortgage and two dependent children.

Tired2022 profile image
Tired2022

Update: I don’t know if anyone will be able to see this, but just in case.

I saw the GP today who has written me up for lots of blood tests. She has given me a sicknote til 3 Jan.

The earliest I can book a routine blood test is 9 Jan. I used the online system then phoned to check. It is the 13 Dec. There are no routine phlebotomy appts in December at any of the four centres in my area. It’s crazy, isn’t it. It will take a month just to get the blood test done.

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