I’m diagnosed with Ehlers Danlos syndrome hypermobility type and fibromyalgia. I was diagnosed with bipolar disorder after a single episode of psychosis over a decade ago.
pain is an every day thing but the past 18 months I’ve felt on a slippery slope. Usually able to keep fit and strong but had really debilitating fatigue, depression, different pain in hands and feet, joint inflammation (including between ribs), skin is so so dry, especially hands and feet, hair become so dry and brittle and completely changed texture, brain not working, I could go on…
GP noticed tsh was up and to retest in 3 months. 6 weeks later went back with worsening symptoms . Went private for bloods (medicheck)
bloods showed
TSH - 6.11 (0.20 - 5.00mu/L)
Free T4 - 14.8 (10.00 - 24.00mu/L)
thyroglubin antibodies - 668klU/L (0-115)
TPA - 22 klU/L (Range: 0 - 34)
ferritin - 28.90 ug/L (Range: 30 - 150)
Grandmother, mum and 21 yr old daughter all have underactive thyroid. Dad had half removed with nodules.
Anyway with the way I’m feeling, when you just know you’re not right I asked to be started on leverthyroxin to bring my level to the low end of normal but GP can’t prescribe because my T4 is fine. Says it’s subclinical TSH levels. Instead will refer me to endocrinology. Also said ferritin levels are a waste of time and don’t indicate anything as rbc fine.
My mums “happy” TSH level is 1.5.
Any advice or guidance would be greatly appreciated. My mum wants me to go private but I’m honestly scared I’ll waste money given some of the threads on here and I hardly make ends meet as it is.
I’ve got to say I’m absolutely devastated for everyone struggling with their health so much with the NHS here. I felt like it must just be me until I looked online. I was made to feel like a fraud for years and as much as I know there’s something not right now, it’s nearly Christmas and with a family of 5 to feed I just wonder shall I just grin and bear it till whenever NHS see me or should I go private?
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Kaatse
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So so far you have had 1 TSH result above range on the NHS? You just need 2 to get diagnosed and begin treatment according to NICE guidelines.
You could try and bring forward your next NHS blood test. Make sure to book it for 9am or earlier when TSH is highest. Fast that morning before the test and stop any supplements that contain biotin as that could affect the test.
Where possible its best to get an NHS diagnosis for hypothyroidism as otherwise the NHS can question it and try and get you to stop treatment at a later date if they arent on board with the diagnosis.
Positive Tg antibodies do mean you have autoimmune hypothyroidism. Hashimoto's if you have a goitre, Ords without a goitre. You could try a strictly gluten free diet to see if that helps symptoms.
What were your folate, B12 & D3 results from Medichecks?
Hypothyroid people get low stomach acid which means they cant absorb vitamins well from their food. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Your ferritin is far too low. You could aks your GP for a full iron panel test.
To raise ferritin we recommend increasing iron rich foods in your diet - chicken livers, pate, red meat.
Fibromyalgia & mental health disorders often are actually a thyroid condition.
Hi thanks for the welcome and your post. Really appreciate your reply.
Had two NHS tests and medicheck is 3rd which is lowest TSH at 5.68.
Should I request a fasting test still? GP is writing referral including all symptoms and labs results asking if they would suggest starting treatment.
I have never been this heavy weight wise, I’m storing fat in places I never had and wondered if it was just being 40 maybe and given my periods are like clockwork but have become extremely heavy for 2 days then stops.
I wonder if I’m putting all my eggs in my thyroid basket hoping that if it can be improved then all these symptoms might improve. I might start to feel more myself again. I’ve gone from deadlifting over 100kg to struggling holding my son in ten months. I feel like my brain isn’t working properly as in I’m losing vocabulary, literally cannot find my words! I caught myself putting the kettle in the fridge last week. I’m having to take pain medication more often which I usually only take with dislocation's and subluxations.
Sorry for the moan! I’m not this person usually!
I supplement vitamin D3 40ug and will increase iron rich foods. Will be adapting my diet to gluten free. I will try any supplement or diet to feel better. There’s a minefield of information online. Just glad I’ve found this site!!
Moan away, I'm sure you have plenty to moan about and people in this group will understand.
I would try a different more helpful GP to see if they will begin your treatment with Levothyroxine. Point out to them that you have now had the required 2 TSH results above range that NICE guidelines recommend you start treatment.
The starting dose of Levo is 50mcgs.
Your vit D is still not optimal. Your result of 67.6 is 'sufficient' but to be optimal it would need to be 100-150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...
Understand that GPs get no training in nutrition so that explains their ignorance. You will be getting plenty of symptoms from having a low, even deficient level of ferritin.
Your B12 level is surpisingly good but your folate level is low.
Folate - aim for a level of 20. Recommend taking an active/methyl (should say on label) B complex which contains 400mcgs folate (also B12). Slightly cheaper options with inactive B6:
funnily enough my B12 was 771ng/L (range 170.00 - 730.00ng/l which was after supplementing with the ‘better you’ oral spray (3 months). I haven’t been taking it so hopefully the B-Complex spray will keep level optimal.
Thank you for the calculator, 187 mcg of vitamin D needed.
Between yourself and Charlie I’m now writing everything down so it “goes in” and so I can tackle my GP and just educate myself on all this.
Hope you’re okay. Noticed you’re a fellow zebra. The symptoms all overlap don’t they!
Thank you for supplying the results of your test but can you edit and add the ranges (in brackets). All labs are different and the ranges can vary.
The symptoms alone sound thoroughly hypothyroid. The TSH by any lab range is too high but the ranges against the results will complete the picture.
Your GP is wrong- you are not subclinical you have OVERT symptoms. He is treating the lab work. Gosh I’m feeling like a broken record tonight alone I have told three different people this. Your TSH is over range your FT4 is low in range you have all these symptoms. Did he check your pulse? Mine was very low before getting onto a therapeutic dose.
Please read by bio - it’s a case study- I became my own advocate and presented sooo much information they gave into me and I got well. I have never had a high TSH and it went below range long before I was on a therapeutic dose of Levothyroxine.
There are also two pinned posts - one is about NHS and NICE guidelines, and also one about TSH.
If you can get a full thyroid panel with essential vitamins that would help you too. There are loads of posts discussing vitamin deficiencies and I would encourage you to look up replies from SlowDragon and SeasideSusie who have provided some great advice on vitamins and supplementation. But you need to know what you need first and being hypo and vitamin deficiencies go hand in hand.
When doctors say they won’t use private tests it is generally because they don’t know how to and are out of their comfort zones. I kid you not 😱
If you dedicate some time to reading up to self advocate you will be amazed how quickly catch up and overtake the average doctor.
Thanks for this! Read your bio and hell you’ve had a battle and a half!
Thank you for arming me with the guidelines. I feel better equipped (if not a little overwhelmed in a good way!) to tackle my roadblock of a GP. I actually said to her today that ‘I know you must speak to so many people and your job is to read results but you’re also human. Have you ever felt the feeling that you “just know” your body is out of whack, like something wrong’ and she seemed to hear me but then told me she couldn’t prescribe. She also said that if she started me on medication then the endocrinologist wouldn’t get a true result which I do agree with. I’m just frustrated that this could be another 6 months, maybe longer of increasing symptoms and I’m not sure how well I’m going to cope. Feels like the Ehlers Danlos scenario all over again. Doctors that didn’t believe until you find one that does.
I have also been a zombie tea maker. Just stand there looking at the kettle, then forget it’s boiled and boil it again… and again… then pour it and leave it till it’s gone cold while I sit down before I fall down. I luckily can drink cold strong tea. 😉
Well time will tell… I’m going to educate with all this info then go in guns blazing… handwritten list blazing.
I wrote a post called embrace the telecon - in the early stages, before I could rattle off like a machine gun, I would book a telecon to get my meds upped and submit a reports a week before (sample on another post) and then they would have to refute my evidence and it was scanned into the system by the reception staff who were fantastic- I always treated them with kindness and they paid me back tenfold for the empathy I showed them. 🤗
During the telecon I would sit with all my papers and data laid out so I could seamlessly keep track with the conversation and ping back stuff if they tried to talk me down on. Actually the last two doctors were pretty good I had one really bed experience with one before, but I think her experience was worse than mine 😂. Suspect I was mentioned in dispatches. 🤣👍
P.S when I was at my worst and undermedicated, (you’ll see, I was mismanaged if you need my bio) I too could not string sentences together, and it would take me in excess of 20 minutes to try and make a cup of tea before giving up going and sitting on the sofa and crying, and I lost all the strength in my hands and I was looking for slip on shoes and Velcro closers.
your symptoms are screaming hypothyroid to me at least, and I’m sure many others will relate.
In women, in many parts of the world, if Hb is below 120 this is an indicator of anaemia. I am convinced the NHS changes their reference ranges to save money. So in many NHS tests of haemoglobin the lower limit is actually 115. It used to be 120. It means they can refuse to treat for anaemia in someone with a result of 115 - 119, if they even mention it to the patient. I'm not sure if RBC has a standard reference range, but I'm sure it is possible they've reduced that range too.
The thing that is usually ignored is that people can have iron deficiency without becoming officially anaemic. And a compassionate doctor should treat iron deficiency whether the patient is anaemic or not.
Another cause of anaemia is low vitamin B12 and/or low folate. Your B12 is fine in the results shown above, but the folate could do with being a bit higher. Treat with 800 - 1000mcg methylfolate per day rather than folic acid, and get your current level up to about 20.
But coming back to your iron, ideally you would have a full iron panel, and then decide on that basis whether to supplement. The reason we usually suggest getting the full iron panel even when your ferritin is known to be low is that in some circumstances serum iron can be very high while ferritin is low, and someone taking iron supplements might push their serum iron even higher - and that isn't desirable.
There are quite a few members who have improved their own iron/ferritin because it can be done without a doctor's permission and without prescriptions. But regular testing is essential because too much iron in serum iron or in ferritin can be dangerous.
Am sending you big hugs. Your symptoms scream Hypothyroid!!With the results you have AND your family history I cannot understand why your GP has just referred you on! You poor thing. I'd see a different GP..... And point out the family history alongside your two blood test results. Ask for a trial of 50mcg Levothyroxine. This won't be enough but it takes time and thyroid meds have to be ttrated slowly up up. Testing bloods every6/8 weeks though NHS seems to extending this now to 3 months. Who knows why!! Money probably!!!
Endocrinology is meant for complex cases. Yours is not complex and so there is no reason not to start you on thyroid meds aka Levothyroxine!! It's a nonsense to say it would confuse the picture..... This is known as a fob off!!
So so sorry. I would not accept this and go back see someone else point out a) your very strong family history B) your highish TSH AND your high antibody result. C) Signs and symptoms. D) NICE guidelines!!
I'm afraid you will find GPs are pretty ignorant around Hypothyroidism.
Lastly knowledge is power. If you can borrow from Thyroid UK, Living with your Thyroid by Barry Durrant Peatfield. You can read it in short bits.... Know it's hard at the mo. Alternatively you maybe able to purchase a used version.
I would also just ask if you have been tested for sjogrens, some of your symptoms are very similar to mine, joint pain, fatigue, dryness. You may have had blood tests, if not it’s worth checking as very common to also have thyroid problems alongside.
Kaate. I believe if you contact Thyroid uk office there is a list of more helpful endos if you need to see one privately. Your GP sounds really unhelpful re your thyroid treatment and ferritin. It is inexpensive to buy a gentle iron supplement and treat your own deficiency of iron but try another GP in practice first.
Try a carnivore diet for the eds and brain fog-once on it for a while expand to animal based. Definitely don't eat gluten-ask for a celiac test and then stop.Your vit d is high enough-please don't up it.
Going private could give you some answers and peace of miind. Choose your company carefully and be prepared to pay for a hospital to do the test if you don't do it yourself.
I have Hashimotoes. Have been taking Levothyroxine (T4) a number of years.
Three years ago I had all your symptoms to the extent that I thought I was seriously ill/declining: couldn’t find words, my speech slowed, I had no thoughts in a previously very active brain, my mood became very dark and I felt mildly nauseous and at times like I was going to faint. Always felt better walking (not what you want to do if really feeling ill!).
There is a gene that goes along with managing the thyroid and it is referred to as DIO2 and the NHS doesn’t test for it, but it is the gene that indicates whether you need T3 which essentially allows your body to use the T4. It can be tested privately by the Regenerus lab. Endocrinologists are mandated not to prescribe it so it is very hard to get, but the gene is one of the conditions that Nice says is ‘evidence of the necessity to prescribe’ .
My suggestion is start with the wisdom of this wonderful community and follow their suggestions for now.
Put the T3 bit in your back pocket, and if you find some of your symptoms persist inspite of getting a good baseline of T4, then perhaps revisit the above. I am only ‘happy’ when my TSH is below 1, and ideally below 0.5.
Your GP is spectacularly out of date re Ferritin - you have Iron Deficiency Without Anaemia (IDWA) - childbirth, heavy periods , autoimmune disease etc can all lead to this.
Treatment is same as for anaemia and you can do it at low cost - 1 Ferrous fumarate tablet per day away from food and other meds/vitamins. Cheaply bought from your pharmacist.
You’re probably entering the peri-menopause years too so be mindful that in the not too distant future you might want to find a GP trained in this and discuss HRT but I’d tackle thyroid and ferritin first. I think you’ll feel dramatically better.
This is a blog post originated from listening to a radio program by Dr Jessica Eccles about Hypermobilty/Ehlers-Danlos. Despite not being about thyroid, it might well be worth a look and even a listen.
However, BBC tend to withdraw some programs after a while - some seem to remain for years, others a year, months, or less.
I'd suggest you copy/paste this in a new post. This board moves very fast and people who have previously replied to you won't get a notification as you effectively just replied to yourself.
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