I’ve joined here with you all as pretty much the whole of this year I’ve basically felt rubbish. Hadn’t really thought much of it as I’m self employed, work incredibly long hours with a large family also.
I’ve changed over lockdown and the pandemic and realised that life’s too short, now work from home and enjoy walking my dog for long walks each day etc ....
I’ve been really struggling with very painful legs and feet (painful joints and muscles etc) amongst many other symptoms .... doctors ran tests for osteo and rheumatoid arthritis and I asked them to check my thyroid ....
Results
TSH 10.92
FREE T4 7
B12 237
FOLATE. 5
TPO antibodies 1135.8
Now waiting on a referral to endocrinology, thyroid scan, rheumatology etc ... sorry for the long post but just feeling typically rubbish and hoping that I won’t have to wait too long🙈
Any ideas for what I can do to help myself in the meantime would be much appreciated ... thanks
Written by
Joanne1633
To view profiles and participate in discussions please or .
Aah thank you 😊 I’ve been reading everyone’s posts, everyone seems so helpful .
My doctor has given me nothing but as I’m really struggling to even manage walking at the moment they’ve given me a prescription for 15mg cocodamol 🤷🏻♀️ I don’t want painkillers, which I might add are really not helping, I really just want some help.
I kinda thought at first that maybe I was just being silly and that I can’t really be feeling as rough as I am (I’m not the kind of person that ever visits the doctors ) but I am worried that I’m going to have to wait weeks to be seen 🙈
That’s pretty awful treatment (or rather non-treatment). You should absolutely be on levothyroxine and there’s no reason why you need to see an Endo before being prescribed levothyroxine—what on earth is your GP thinking??
Is there another GP in your practice you could see?
Thank you for the reassurance, being completely new to this I thought that maybe I had to be seen first. Im going to call first thing in the morning and insist that they give me an appointment ASAP as my doctor said “she needs to feel my neck” ( we’ve been in self isolation until today as my sons just had an operation) ... to be fair I’ve only had telephone calls with the doctor so far but I’m that desperate that I broke down in tears and she just tried to palm me off with painkillers .. I’m hoping that when I go in I can insist that she at least starts me off on some meds 🤷🏻♀️
Hi Joanne, i'm quite surprised that GP hasn't already prescribed you some Levothyroxine with those results.
Is that the first TSH/ FT4 you have had done ? I know they are supposed to wait 3 mths and test again if they think it's 'subclinical hypothyroidism'.... but those results look like Actual hypothyroidism already (assuming that the FreeT4 of 7 is below the bottom of the lab ref range that came with it ,and i'm fairly sure it will be , i don't think any of the ranges have a lower bottom end than 7.9 )
And yes I feel awful .... I’ve got to go to the doctors so that she can “have a feel of my neck” as soon as I can get an appointment but apart from that all she said she can do us give me cocodamol to help with my pain 🙈
That’s just not true. She can (and should!) prescribe levothyroxine. “Ordinary” thyroid disease isn’t usually something that requires Endo involvement. Do you have an underlying condition that’s making her hesitate? Because there’s nothing obviously complex about this diagnosis.
No, no underlying condition at all ... I’m totally baffled ... 🤷🏻♀️ my doctor has just left the practice and this is a new doctor that, with the pandemic, I’ve never met so I can’t really say what she’s normally like as a doctor.
I recommend you ring up and say you'd like some levothyroxine please, or an explanation of why not Preferably 50mcg starter dose, and don't get fobbed off with just 25mcg unless you are a petite old biddy with a heart problem..... you're not are you ? you don't sound like one .
Yes I’m going to call first thing tomorrow ... I knew nothing other than to believe them at first but after reading lots on here and help from you all I know that I’m not asking too much of them 👍🏻 haha ... I’m not a petite old lady with a heart problem but I bet a petite old lady with a heart condition feels better and moved about quicker than I do right now 🤣🤣 I live in a village surrounded by fields, it’s lovely but lots of the elder people who live around here move about better than me at the moment 🙈🤪
Well if it makes you feel any better , you're ahead of the game ... i was daft enuf to believe them for about 17 yrs ....... It's really annoying watching grey haired old biddy's going for a ramble when you can't be arsed to get from the car seat to the front door isn't it.
Don't worry, you'll be overtaking them again one day.
It really beggers belief how incompdent some gp are 😠 back in 2015 when like you I became very ill my gp fobed me off for years , with painkillers ho and the dreaded menupause were to blame for my symptoms!! I did get to see an endo my bloods showed low TSH, in my records for which I've just received it clearly states hyperthyroid? Then some months on its says thyroiditis 🤷♀️ one endo wrote " I can find no sign of a goiter although bloods showed possible hyperthyroid, thyrositis, the bloods are now normal, well fast forward 3 years later when I was rushed in to hospital in thyroid storm, I was hyperthyroid for all that time diagnosed with graves😠 so my advice is get to the doctors and insist they take action in treating you as for painkillers tell them to stuff them because that's what my gp prescribed me for 3 years.. I now have no thyroid mine was so bad it was toxic and was removed in 2019😢 I my experience dealing with GPS I found you have to stand your ground after all its your health that matters.. And as I've said before GPS are here to help us 😠
Good luck, you will find people on here can advise you, h they have helped me no end.. ❤️❤️❤️
OMG .we see some rubbish from GP's on her . but really .... If you have 2 x over range TSH(3mths apart) especially since it's now over 10 which even the meanest of GP's should admit is hypothyroid.... and FT4 crawling along the bottom of the range ....and symptoms of hypothyroid...., and especially if you have TPOab that high , then i don't see what they are waiting for.
It's not necessary to check TGab's .... they have the evidence already with the TPOab's.
Raised TPOab's indicate a high likelyhood of Autoimmune Thyroid Disease developing and the person eventually becoming actually hypothyroid . which your results say you are now. Or near as dammit. (technically your FT4 would have to go below 6.3 on that range)
Oh well i suppose we should be grateful for the fact that you have been sent to an endo , booked for a thyroid scan , and a Doctor has actually agreed to feel your neck ..... that is a lot more than most of us get.
Come back with new post once you have seen/spoken to GP
B12 looks very low
Folate borderline
You need Vitamin D tested
you have high antibodies this, confirms cause is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
About 90% of primary hypothyroidism is autoimmune thyroid disease
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Thank you so much.... I’ll go through all of your links in the morning and chase up my gp with this info in the morning too .... I’ll keep you posted on answers 😊
I had similar results to these when I was diagnosed 2 years ago.... I felt horrendous!!!! You absolutely need levothyroxine, I started on 25mcg (because I’m nervous of taking medicine, in hindsight I should have started with 50mcg)
Follow the good advice on here and ring your Dr or speak to another Dr and insist they prescribe you x
Just to reassure you that you are not making a fuss over nothing ....... those results are worse than mine when i was diagnosed, My TSH was only up to about 7 and my FT4 was still within 'normal' range. when they saw my TPO ab's (Thyroid Peroxidase antibodies) were nearly 3000 they gave me Levo the same day. Your TPOab are also very high ,not many people on here have them in the 1000's.
I did not see an endo or have a scan before being given Levo, GP prescribed it same day he got the TPOab's back (i had been going in moaning for months before tho' and it was my 2nd over range TSH)
Thank you that makes me feel better as I rarely ever go to the doctors and I’m pretty much a tough cookie that just gets on with things but I think you know when somethings not right. Wow 3000 !! I thought mine seemed high ! You must have felt awful !!
Actually most opinion is that the antibodies don't make you 'feel ' anything. They are just labels that there is a bigger mess to clear up.
What makes you feel bad is the level of FT4 (and more importantly FT3) or rather the lack of FT4 in your case. Mine was still mid range when diagnosed , so quite probably you feel worse than i did.
But since NHS rarely test FT3 we never get to find out what's really going on. T4 is a storage form of thyroid hormone that hangs out in the blood waiting to get turned into T3, and that's the one that makes everything work properly . or not !
Welcome! And Wow! Where do you live to get such extensive treatment? Referral to Endo, thyroid scan, rheumatology?
What are they looking for?
Did you get ranges with your results? Each lab uses different ranges depending on the area their in and the equipment used so ranges are essential. So you result is FT4 7 (range) eg mine at my lab are often FT4 16 (12-22)
So they didn’t check TGab? And they didn’t check FT3?
You must be feeling really pants! Let’s hope they get you sorted quickly! Do you have to wait long for your appointment?
Thank you sorry I answered your questions also in the last message 🤪 yes I feel awful and I really hope I don’t have to wait weeks for an appointment 🙈 I’m in essex
If you ever want to tag someone else into your reply, the way to do it is to type @ followed by the user name of the person you’re wanting to tag.
So for me, it would be @ Jazzw (but without the space between @ and the name). As you type, the app will automatically suggest names so that you can pick the right one.
My start on hypothyroidism was similar, I had all the symptoms and just carried on and on, slowly getting worse. Luckily my GP checked my thyroid and found the problem.
There’s no point not getting treatment as you won’t get better without the medication.
If your GP is refusing treatment then just change practice and your new GP should prescribe based on those results. Strictly speaking they should check again after 6 weeks before confirming diagnosis, but with your results there’s little doubt really.
I would commence treatment with the GP ASAP but also get an Endo referral which will take some months to come through. If you can afford it go to a private Endo as they can accelerate your treatment and get you better quickly.
My GP took a very cautious approach with minimal dosage. I went to a private Endo and he quickly upped my dose. I got better quickly, under my GP it would have taken over 6 months to be on the correct dosage. No point losing 6 months of your life for the sake of a few hundred pounds spent on private Endo.
You're not being silly, you are unwell and any doc should see this.
TSH of 10.92 signals hypothyroidism and the need for levothyroxine......starting dose of 50mcg, tested after 6 weeks then increased by 25mcg and repeated till FT4 and FT3 are close to 75%through the reference range. For good health TSH should be close to 1
Your doc needs to go back to med school!
Your antibodies are high indicating Hashimotos, gluten free diet often helps.
Hi and welcome, a lot of experience in this forum.
You need to get back onto your doctors and demand a starting dose of levo as this is neglect, it could be mo ghs before you see an endo. In the mean time may be worth taking selenium 200ug and trying a gluten free diet this may help reduce the antibodies. Stay safe, kev
I feel for you Joanne. I was left for over a year by my GP. Constant visits telling them about my symptoms.... joint pain, extreme fatigue, swollen eyes, anxiety (which I'd never had before) low mood and generally feeling like I was dying a slow death. They told me my symptoms were due to the menopause. When my hair started falling out, I went back again and cried with frustration . Finally did my my bloods and my TSH was 120!!
My cholesterol level was 7.9. Needless to say I got a call immediately to go into the surgery.
They were more concerned about the lipids as I have history of strokes with my parents
It took a very long time to start feeling anywhere back to normal.... 2 and a half years. Started on 50mcg levothyroxine and increased to 75mcg, which made me feel much better for a while.
18 months in and the levels crept up again so increased to 100mcg but I really had to fight to get it. Just waiting on my last bloods now to see how I'm doing.
If theres one thing this taught me, it's to listen to your body. We know when it's not right. Wish I'd taken the advise of someone earlier and gone private!
I supplement with selenium, vitamin d, zinc and also take b12. Feel better than ive felt in a long time but still have days where I feel so tired.
Hope you get it sorted and soon. You shouldn't have to feel the way you do, not when you have those results in black and white.
Me too, i was fobbed off 16 yrs so took a few yrs to repair system moreso but do need supps especiAlly D for me ...... once D B12 & folate improved there was marked difference meaning I could walk upstairs rather than crawl!, your resilience can have a challenge, my TSH was only 5 so shows how individual we are regardless of a blood number!
Can read topics here if type in Search Box 👍🏼 Good luck and wishes
Magnesium a strong contender too if have a read and important as many get low and k2 with D directs calcium to the right places rather than arteries possibly
Might be mentioned but own blood checks can be helpful to know where you up too and Adrenals can be low too which appreciate a bit of support
Dr John Bergman on u tube is great at showing how it all ticks 👍🏼😊
....ps. Yes gluten free brought my antibodies into range others same, so worth the tweaking, and also gut healing vital, its being mentioned more now thank g as is the foundation of us all, healed gut alleviates indigestion, wind, heartburn etc, and any tiny pin holes you heal up prevent more autoimmunes! It should be manadory as also prevents colon probs 😊x
Dear Joane1633, I can feel the pain you must have, when I saw the blood test result. You said that you had all kind of tests, but nobody of the doctors, you consulted, came to the conclusion to see a human body as one. I hope, you will find help.
I personally had a war with doctors from NHS, who don't want to think, to help and to prevent or they are not allowed to help, because of guidances from the government.
You finally had a least a blood test showing that something is very wrong with your body. Before your Thyroid is treated properly, the symptoms and actions of your body will be there and will bring you more diseases.
Try to find a specialist, who is willing to help you.
I wish you luck, because I did not even speak or see my GP since last September, not to speak about the unlawful actions of an endocrinilogist - this year -.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
)
What combo of meds ?? 
Thyroidectomy advice
My Journey - Part 1 *Warning long post*
Feeling so down after months of trying everything. Would really appreciate advice on latest bloods.
