It’s been about two years since I last posted when I was diagnosed with Hypothyroidism caused by Hashimoto’s in August 2016.
To cut a VERY long story short, I’ve had a very up and down two years trying to find the right Levothyroxine dose. I’m now on 125mg and still struggling with fatigue, hair falling out, concentration, brain fog, etc. but my GP is reluctant to up my dose more as I’m in the middle of range so my ‘thyroid is fine’. Instead she has latched onto the idea that I have CFS/ME which I was referred for and diagnosed with in July 2018.
I asked my GP to refer me to an endocrinologist.. as much as she disagreed she gave me the referral but endocrinology rejected my appointment I had made for September.
How anyone else been diagnosed with CFS/ME? What are your thoughts? I personally don’t feel (or maybe I’m being stubborn) I have CFS/ME as my symptoms still match more with the thyroid as I don’t suffer from any muscle pain like a typical person with CFS/ME would.
What do I do? I’m going back to work in a weeks time and working with the symptoms I’ve got is hard - I just want to get back to having energy.
Edit: blood work:
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Nicolet89
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but my GP is reluctant to up my dose more as I’m in the middle of range so my ‘thyroid is fine’
What's in the middle of the range? If that is TSH then that's too high. If it's FT4 and FT3 then that's probably too low.
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.
So ask for a print out of our results, including the reference ranges (don't accept verbal or hand written results, mistakes can be made), then post them on the forum.
As you have Hashi's, this often results in low nutrient levels or deficiencies, so these need testing as well if not already done.
Ideally we need to see
TSH
FT4
FT3
Vit D
B12
Folate
Ferritin
As you have Hashi's, are you strictly gluten free and supplementing with selenium l-selenomethionine 200mcg daily which can help reduce the antibodies, as can keeping TSH suppressed.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
What is your current Vit D level and what are you self supplementing with? As you have Hashi's an oral spray gives best absorption as it bypasses the stomach - BetterYou do one that is popular with members. Dose depends on current level.
There are important cofactors needed when taking D3 as recommended by the Vit D Council -
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
I have replied further down about the results you have posted but forgot to mention your ferritin level.
For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...
Iron is a tricky subject. You have to be careful about iron supplements because if you have low ferritin but high serum iron, taking iron tablets may not be the way to go. Which is why I never suggest iron supplements, I only every suggest raising ferritin by eating liver, which is how I raised mine.
Have a read through this thread and check out all of Humanbean's replies, she understands iron much better than me and you should be able to get a better picture than I could ever paint
I'm a liver hater too, but I do love black pudding so I eat some of that with bacon and egg for breakfast at the weekends. I also love pate, so I have that too. I am using the BetterYou Iron spray too and will see in 2 weeks time if my efforts have helped me.
I've only been actively reading/helping myself for about 3 years, being diagnosed hypo for 43 years and unwell for the last 20 has given me the incentive to try and help myself because doctors haven't been inclined to do so! However, there are many, many members here who know more than me, I just know a little bit and vitamin stuff has just clicked with me for some reason.
Yeah I might have to do the same as GPs seem to be struggling (sorry to any good GPs out there). You’ve given me a great starting point for reading - thanks again xxx
Which level is right in the middle? The TSH? If so, then you're probably still hypo, depending on the range. And, if all your doctor is testing is the TSH, then she has no idea what's going on. And, how can your thyroid be 'fine', when you have Hashi's?
They like to 'diagnose' CFS/ME when they're totally out of their depth, and don't know what to do next. That way, they can put everything down to that and not bother about you anymore, because there is not cure, or even a treatment for CFS/ME. They can just consign you to the dustbin and forget about you! Whatever you do, do not accept that 'diagnosis' or no doctor will ever take you seriously again.
Get a print-out of your test results, and post them on here, with the ranges. Then we can see what's going on.
Exactly. Just say no. There's no reason why you should accept it because the doctor cannot prove that you have it. There is no test of any kind that can show you have it. Whereas testing the thyroid gives a very good guide to thyroid management - providing the right tests are done! I'm not convinced CFS/ME even exists!
However, you only had the TSH tested, which tells you nothing. Although why she thinks it's middle of the range, I don't know. I hope she's a better doctor than she is a mathematician! Your TSH is actually good. But, that gives no indication as to the levels of the FT4 and FT3. She should not be dosing by the TSH. That is the best way to keep the patient sick.
Do not accept a diagnosis of FM/ME/CMS....I did that for a few years and became very ill. I had also been diagnosed as hypo about 30 years ago and was using levo. GP saw no link! I started asking awkward questions.
Thanks to wonderful advice here it turned out that my hypo had been wrongly medicated and this was the cause of my gradually decling health....not a "bucket" condition!
Carefully follow the advice offered here and things will improve....I can vouch for that!
Your TSH is in a pretty good place. So as you still have symptoms, those other tests I listed are now very important, they will hold the key to why you feel as you do.
If your GP can't or wont do them all (doubtful for some of them) you can do them privately with a fingerprick test (or venous blood draw) from one of our recommended labs. Particularly recommended are
I’m just ordering the blood test from blue horizon (going to opt for the nurse visit on this occasion being the first time unless you suggest otherwise?) - there is an option for reported or unreported... which is best? xxx
I go for unreported because I can interpret blood tests.
As it's your first experience of a private test you could have the comments, but when you put your results on the forum then you will probably find that members' comments differ from the BH doctor's comments. This is because they follow the same lines as NHS doctors (they're all NHS trained) and often go by "in range" regardless of whether the result is high or low, often say a below range TSH is indicative of overmedication even when FT4 and FT3 are in range. Usual stuff that we get from our GPS that drives us nuts
It may take an extra day to receive results with doctor's comments, but they should be emailed to you within 48 hours.
Or you can have unreported and put your trust in experienced patients here, you won't go far wrong
As you are new to private tests, not a bad idea to get the home nurse visit. I find fingerprick tests easy but I have done quite a few now. You could try a fingerprick test if just doing a monitoring test for TSH, FT4 and FT3 at a later date when not so much blood is needed.
If you manage to get the code to work that discount will go towards paying for the nurse visit, I hope the 20% one works.
There are far more qualified people on here who will be able to help you far more but I just wanted to say I’m in the same position.
Again, long story (see my profile) but suffice to say I’ve come to the conclusion there is no such thing as cfs!! Just poorly treated thyroid conditions.
I have spent the last year supplementing everything and trying to get my dosage right - having had no issues previously.
I’ve found out I don’t convert very well and as my gp has also decided I must be fine, I have self referred to Dr Toft in Edinburgh and I hope he will be able to help me get my meds right.
As I say, maybe not very helpful but just know that I get your struggle. It’s so tiring and frustrating but keep going, keep asking and you’ll get there 😉
I’m much improved from the “crash” I had last year but that took me until about April/May this year before I felt back to about 60% normal! I’d say since then I’ve maybe improved to 80% of normal, but I’ve still got a long way to go.
I believe a lot of my problems involved adrenal fatigue, and that has I think improved. I’m sitting next to a cortisol test though that I’ll do tomorrow to see!
I think now I need my meds optimised. I’m not converting well and have just changed from Teva after reading here how bad it is! How did no one notice this when I’ve been complaining for a year! Fingers crossed I get some improvement there too 🤞🏻
Hope you continue to improve Murphysmum. Very interested in what you say about ME/CFS and thyroid conditions. I have 3 auto-immune conditions now (thyroid being the latest addition). Two of my children have been diagnosed with ME/CFS and have really struggled with poor health for the past 2-3 years. If you have any advice I'd really appreciate it. My daughter's GP told her that her thyroid was normal. My son had suspect thyroid blood tests a while ago but as far as I know, they are now 'normal'. They're both at university and it's had such a detrimental affect on their ability to study and lead a normal life.
Absolutely essential to test vitamin levels and thyroid antibodies
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Just testing TSH is completely inadequate. Many, many patients have low TSH, long before adequately replaced, or have Hashimoto's and low vitamins
I am very new on this journey but just wanted to say that my situation is very similar. I had genuine CFS in my late teens, and it's been the go-to diagnosis for every health upset since. I was confirmed as having Hashimoto's 4 years ago but did not have the TSH necessary to get treatment on thyroxine. I am also a teacher and have had masses of problems with fatigue, hair loss, joint and muscle pain, brain fog (you name it!), so can empathise with how you are feeling at the start of a new academic year. I finally had a complete health collapse last year and haven't worked since. My GP denied that my thyroid was the problem and I waited out the 6 months before qualifying to see a CFS specialist. The specialist took one look at my blood work and my symptoms, and suspected that my thyroid, not CFS, was the issue. Some private testing and a private endo appointment later, I am now being treated for hypothyroidism, am trying to optimise vit and mineral levels and have been discharged from the CFS clinic. Teaching really reduced my Vitamin D level too as I rarely got outside during the school week. Being gluten free has helped me immensely - I also avoid soya and dairy. On the teaching front, I used an amazing app Fit2teach which kept a check on my work/life balance and helped reduce stress. It's so easy to get sucked in to the mega-hour working week in teaching, so very much hoping you can be kind to yourself when term starts. Enjoy the end of the holidays.
Wow sounds like you’ve had a rough time too! Glad you have finally managed to find the reason through private health care.
I’m definitely going to get the private blood work done. How did you best find a private endo? I would like to go down that route too. I’m not excepting CFS - I know in my heart it’s my thyroid / vitamins.
I am also going through fertility treatment and had my endo recommended to me by my clinic. He's definitely not alternative, but I just really needed to actually start some treatment. There is a good doctor list available from thyroid uk, with lots of possibilities. I also knew that it wasn't CFS this time - our gut feelings are the best guide - so keep fighting.
Good luck with the app. It really forced me to do something nice for myself every day and focus on the positives of our lovely jobs.
I would advise not to go private yet because it's a pig in a poke finding one who knows anything and it gets very expensive very fast. First off get all the blood tests sorted that have been recommended here and come back for help and advice. Accept that you are going to have to do a lot of this yourself. After a few years of struggle I gave up and accepted a bit of defeat and threw myself on the mercy of a private doctor who told me she'd take over. That was a mistake and has just delayed my recovery. I knew it was wrong at the start. I just needed a break from constantly thinking and reading about it.
This group of people will be able to help you a lot and getting private bloods and then adding in the supplements you need etc will be far cheaper than an endo who is likely to dismiss you and won't bother with your nutrients anyway. I'm sure there are good ones, but they are not easy to find.
Yeah the blood work is my first step, will book it later tonight 👌 then will post my results on here - there are so many people on here who have so much more understanding about results xxx
Will be good to know your b12 level once you have your results. Under active thyroid and low b12 often go hand in hand. As well as thyroid being misdiagnosed as CFS/ME, so too can b12 deficiency as symptoms can overlap. Doctors often have a poor understanding of the two.
Unfortunately, if you have taken any b12 supplements, it will show a false higher reading.
I’ve not had any supplements apart from vitamin D as the GP actually tested that one and it came back as deficient so hopefully when I have the blood work done it should be accurate xxx
Just a TSH result is no use. You need free t4 and Free t3 as well - the actual thyrpod hormones. If your GP won't test them you need to get private tests done through Medichecks or Blue Horizon. There is probably no such disease as CFS, just undertreated thyroid and adrenal problems (and possibly Lyme disease). I would resist a CFS diagnosis as it is an excuse to ignore any physical symptoms for the rest of your life and send you for damaging "treatments" like graded exercise and brainwashing that have been shown to make most people worse
Update: Thanks for all your advice. I’ve ordered a blue horizon nurse visit blood test (Thyroid check plus eleven). I have to wait a bit though, nurse is booked for next Thursday 30th August at 12:30.. only appointment they had next. Any advice for before the blood test? xxx
Aah that's something. Vitamin D needs to be 125+ to support the thyroid plus you need k2 and magnesium to support the D3. The vitamin D protocol has more information plus more info on this site too. SeasideSusie explains it very well 🙂
Wow well my vitamin D was way too low then at only 25 🙈 I’m sure it’s higher now, just waiting for the printout but I’m sure loads more work needs to be done on it xxx
Hi. I'm Hypo/Hashimotos 11 years - and ME/CFS since 2012 BUT I was somehow able to keep functioning with difficulty (on adrenaline 😞 ) until tipped over to severe level for the past 3 years. My background is as a Professional like you, so I get it. I was in Corporate business where I was travelling all over the UK for 28 years & also a single parent for the past 9 years. I got absolutely nowhere re. Hypo/Hashimotos (let alone ME/CFS) on the NHS, including seeing many Endocrinologists. All totally dismissive and shockingly lacking in any compassion. So many tearful experiences where I wasn't heard. Also refused any of the tests required to establish the full picture bar the bare minimum, and refused T3 despite my results and complex medical history. I'm sorry to say this but you will have to find a Functional Medicine Doctor privately as you'll get nowhere on the NHS. I say this because I saw an Endocrinologist Privately and she was absolutely useless.....several hundred pounds later. It was just the same as seeing one in the NHS. Ask for recommendations on here. I could not and cannot afford to go private but I have had no option, and found someone in my area (SK12) in October 2020. Try to find someone before you tip over like me, because our stories are so similar. I was finally diagnosed with Hypo in 2011 after dreadful symptoms for years and being ignored as " you're just stressed", I was started on Levo and have never felt any better....doses up & down for no good reason....all the symptoms you describe....and then as I said, my Hypo/Hashimotos developed into ME/CFS as happens for so many on here. Good luck and take care 🙂
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I will add that to the weekly shop xxx
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