Thyroid UK
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Possible Misdiagnosis??

In October 2017 (3 months after having my 3rd child) i was suffering with joint aches & inflamation

it got so bad i was struggling to walk, my gp sent me for a rheumatism test which came back negative but flagged up extremely low vitamin D levels, so i was given 50,000units to take per week for 8 weeks and should go back for another blood test to ensure they had gone back up.

however after recently finding the packet i muat have only taken 5 weeks worth & didnt go back.

3 children keep me busy so i forgot.

fast forward to january i was still feeling exhausted and fatigued all the time & exceptionally low.

but put it all down to my baby waking up early.

by the end of february i started struggling with low mood & extreme anxiety / intrusive thoughts.

i was rediculously shivery / cold

no appetite, always feeling sick, agitated & shaky.

it was all put down to Ocd which i was diagnosed with in 2015 when my daughter was 2. i was also told by the duty mental health team that i also had post natal depression & was started on Mirtazapine 15mg and recently had this increased to 30mg (17th April)

a friend of mine recently suggested getting my vitamin / iron / thryroid/hormones checked because she says i have a number of symptoms consistent with thyroid issues.

constantly fatigued/ no energy even after a good night sleep

joint aches especially wrists, knuckles, knees, hips

muscle weakness (always feeling like ive been in the gym all day every day)

Constantly feeling cold

Numbness & tingling hands especially down the outside of my hands & litter fingers

Nails all have vertical ridges

anxiety & depression

My doctor has requested a blood test but with so many people saying theyre being told the bloods are normal im worried.

is it a possibility? my youngest is only just coming up to 10months.

thanks for any advise :)

39 Replies
oldestnewest

i also forgot to add in

i also suffer from light headed / dizzy spells

sometimes feeling agitated / shaky/jittery for no reason

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It's a possibility at any time in your life. But especially after having a baby.

When you get your results, make sure you ask for a print-out of the results. It is your legal right to have one if you live in the UK. Post them on here, with the ranges, and we'll tell you if they're 'normal', or not. Usually, when a doctor says 'normal', all he means is 'in-range', he has no idea what truly normal levels are.

Dizzy spells could be a hypo symptom, but it could also be a symptom of low B12. So, you should get that tested at some point. :)

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thank you. im not sure of what Gp is testing for i know he is checking for anemia, Vitamin D & thyroid. i pick up the blood form today.

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Sadly the Thyroid testing may only involve TSH - which tells you very little about how the thyroid is performing. You also need - FT4 - FT3 & ANTIBODIES TPO AND TG. FT3 & Tg rarely done on the NHS - so you only get half the story.

B12 -Folate - Ferritin in addition to VitD need testing.

Private testing available through Thyroid UK - go to ABOUT TESTING in Menu of link below ...

thyroiduk.org

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i had bloods done whilst in a unit as a voluntary patient ..i never got to see the results or what they were used for.

My gp never mentioned them, do you think if i ring the unit they will send a copy to me?

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You are entitled to a copy, that's the law. And, if they refuse, there are steps you can take to force them.

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AGREE !

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Update :

I had my bloods done on tuesday, results are back in but as it stands all they tested for was

TSH

Vitamin D

Ferritin

FBC

Hba1

My tsh level in october 2017 was 1.4

Vit D was 22.

ive just been contacted to say my results are back and need to speak to Gp as a couple of the results require an appointment. the receptionist did confirm the TSH was still 1.4 (had blood test at 10am & only drank water upon getting up) & Vit D was 44 she wouldnt tell me anything else so will have to wait until i see the doctor on the 17th.

So the joint pains im still experiencing arnt due to vitamin D

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I am sure you can tick off more than a few of the following symptoms. Joint and muscle pains are common in hypo.

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

When you quote results you also have to put the ranges. The reason being, just to complicate things, labs use different machins and different ranges and it helps members to respond when the ranges are given. For instance GP will say everything is fine re numbers and they may go by the lowest number in the range, when we should be nearer the top.

Also, if you've not had antibodies tested ask for these next time. If antibodies are present you would have the commonest form of hypo, i.e. an Autoimmune Thyroid Disease - due to antibodies. Antibodies attack or gland and wax and wane until hypo. Going gluten-free can help reduce the attacks and can reduce the antibodies too. Also request B12, Vit D, iron, ferritin and folate if you've not had them tested.

On the following you will see why we need the FT4 and FT3 tested (rarely done by the GPs).

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

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my GP practise only test TSH

so unless the individual parts are on the blood result paper ...they wont have been checked. i will have to get a full panel done private when i have the funds to.

but il update with whats on there when i pick a copy up

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In the UK, for some unfathomable reason, it has been recommended that

doctors diagnose when TSH is 10. In other countries it is 3+ along with symptoms. This is from TUK and you will see the difference:-

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

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VitD is good around 100 so you need to be supplementing still. Not expensive to buy.

Also VERY important to know your B12 level as it can be connected to mental issues along with Low Thyroid ...

Hope all goes well with GP appointment. Post results and ranges in a new post so more members see it.

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Becky

You won't know anything until you get your results so try not to worry.

I'm sure that your GP won't get everything done to give a full picture, see what there is, post results with their reference ranges (very important to include the range) and we can interpret them and tell you if you need anything else tested.

You can ask your surgery's reception for a print out of your results, it's our legal right here in the UK to have our results. Don't accept hand written or verbal results, make sure you get a print out.

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It's also our legal right in the US. Online results are getting very common over here and I would ask the doc if the practice has this. Patients have total access to info this way and also in a timely manner. Info is entered automatically so no dealing with stubborn, forgetful staff. It's interactive and patients can send questions to any caregiver that uses the system. If we don't get a response in a timely manner we can message them until we do without having to use the phone or go through all the 'middle men' who often make it difficult to communicate directly with the doctor. I love this system.

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NHS England is supposed to have online access for patients, but some are dragging their feet. I live in Wales and NHS Wales is separate and have their own "rules", online access isn't available with my surgery because they're waiting until they're sure everything is safe and protected! Piffle!

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Good word! PIFFLE.😊

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results are back. only tsh was tested and apparently its still 1.4 which is what it was in october, had them done at 10am ..and just drank water before hand rather than coffee.

Vit D came back at 42 (was 22 in october)

also had FBC, Hba1, ferritin & the usual liver ones. receptionist said gp had requested to see me as there are a couple of things on the results that need to be discussed. wont see them until the 17th.

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Becky

If you are in the UK, you don't have to wait until you see the GP to get a print out of your results. Just pop into the surgery and ask at reception. As long as a GP has seen them then you are legally entitled to them. Don't accept verbal or hand written results, get a print out and make sure the ranges are with the results.

If Vit D is measured in nmol/L you are very low at 42. The Vit D Council recommends a level of 100-150nmol/L so you need to find out what the unit of measurement is, if you are in the UK it is most likely nmol/L.

TSH on it's own is not an idicator of thyroid function, you need Ft4, FT3 and thyroid antibodies as well.

Pop the results and ranges on the forum when you have them, members will comment and then you will have something to discuss with your GP when you see him on the 17th.

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im told i will have to pay for a print out of the results :/ but will ring tommorrow & find out. my gp dont run Ft4/3 ..only tsh id have to pay currently saving the funds to pay for a full check

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Becky

They aren't allowed to make a profit from giving you your results. They can charge for paper and ink but that's all, mine are free, I would kick up a fuss if I was expected to pay more than £1.

You could always ask to look at the computer screen and take a photo, or write them down yourself.

By the end of this month we will be allowed to have our medical notes free of charge apparently.

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i didnt know this i dont mind paying £1 its a small price to pay to make sure my health isnt just brushed off.

will give them a call tommorrow & collect them. wish me luck! one of the receptionists/secretarys are quite snappy haha

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Becky

If they tell you something stupid like the charge is £5 or £10, then tell them that you know that for £10 you can have ALL the records held electonically by them - see

nhs.uk/chq/Pages/2635.aspx?...

The BMA have this on their website bma.org.uk/advice/employmen...

Please note what you can and cannot charge

•For access to the information where records were made more than 40 days before the date of the application for access, a maximum of £10 can be charged.

•For providing access to information if the records have been amended or added to in the last 40 days, no fee may be charged.

For supplying copy, a fee not exceeding the cost of making the copy and postal costs may be charged.

Charges should be proportionate and justifiable and should reflect the actual costs incurred. They should not result in a profit for the data controller.

•Health professionals may charge a professional fee to cover the costs of giving access to the records of deceased patients that is not covered by legislation.

•There is no obligation to comply with a request for access unless the required fee has been paid.

If you are in England your surgery may be one of those which gives online access to test results so it's worth asking about that and signing up for it if they do. I think it's called Patient Access. Apparently they're all supposed to but some do, some don't. I live in Wales and it's not available here, at least not at my surgery, NHS Wales is different from NHS England.

Or you could make an appointment to view your results and write them down.

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thats good to know so at least if i get the narky receptionist again i can relay the above :)

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just while we are on the subject....

Gastritis is that linked?? i ended up back in hospital only 12 days after a section for suspected embolism..which turned out to be acute gastritis ...and since ive suffered on and off...generally causes chest/rib aches & nausea.

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Becky

Sorry, I don't know anything about gastritis so can't say if it's linked or not.

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If we are hypo, usually we can get stomach problems and doctor will prescribe an antacid, whereas we usually have low stomach acid. Low stomach acid causes symptoms as acid is required to dissolve food. Many of us supplement with Betaine/pepsin tablets taken with meals and many doctors (due to symptoms being so similar) prescribe an antacid which we don't want.

universityhealthnews.com/da...

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im always given ranitadine.

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Try the one suggested above. More natural .... 😊

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Welcome to our forum and I am sorry you don't feel so well.

It is good to get a blood test for your thyroid hormones because many women, for some reason, develop hypothyroid after childbirth, so it could be possible.

In the UK it is not easy to get diagnosed if our TSH is below 5. In other countries we're diagnosed if it goes above 3. But that wont make sense to you at present.

Your GP may only test TSH and T4 but that doesn't give a full picture of your thyroid hormones.

The following is a list of symptoms of hypo:-

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

All tests for thyroid hormones have to be at the very earliest (TSH drops throughout the day and that's all the seem to take notice of). Don't eat before the test but you can drink water. If taking thyroid hormones you'd allow 24 hour gap between last dose and test and take afterwards.

Ask GP to test, TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. She/he or the lab may not do all of these but you can have a private test for the ones not taken. These are home pin-prick tests so make sure you are well hydrated a couple of days before blood draw.

GP should also test B12, Vit D, iron, ferritin and folate. Everything has to be optimal.

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

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Thank you ..i had a look at that list, i checked off 33 of the symptoms listed. thank you for your advice

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Hi Shaws. Just wanted to thank you for the above website re symptoms. It is a very thorough list and I like the 'checklist' format. So much so that I copied it and plan to print several blank copies. This way before next endo appt I will check off what sx I have and what's improved or worsened. A great way to keep track of my progress rather than the usual doctor visit question " What brings you here today?" I plan to keep my lists in a folder and bring to each visit. I'm probably too much of a 'record-keeping junkie'. But having progress reports in an easy format like this has to help me get accurate and better care. Hope this idea helps others too. Take care xx irina

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I doubt, before any of us got diagnosed, that we would ever have dreamed we'd be on a website looking for information/advice on one of the most common autoimmune diseases, only because the 'Authorities' have lost the knack that doctors used to have before the introduction of blood tests and synthetic hormones. We used to be diagnosed upon symptoms after NDT was introduced and prescribed until symptom-free and no blood tests to restrict or otherwise. The following may interest you although NHS stopped prescribing and then 'false statements' were made about it. Some members source their own hormones.

hypothyroidmom.com/study-re...

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my grandmother has been experiencing the same thing for 4 years, i recently took initiative to look these symptoms up myself after so many times doctors telling her that there is nothing wrong with her when obviously there is. my grandmother is in depression because she fears that anything she eats will trigger inflation and the last doctor visit we had, they preformed surgury on her to see if there was anything inside that was causing this pain. again, there was nothing. at this point im in desperation to find something that will put an end to this. i didnt expect others to be going through the same situation, but this shows that if she isnt the only one, then there is a way for you an her to get better, thank you becky for sharing this information, i wish you the best and if there is anything that you find out about this, please, contact <personal email address redacted>

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It's really not a good idea for you to put your email address on a forum. It's not even a protected post, so your email address is there for all the internet to see. If Becky want's to contact you, she can send you a Private Message on here. No need for emails. Or, you could send her a PM giving her your E address. :)

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thank you everyone for your replies.

i pick the bloods request up today it takes about a week for results to come back so will post in here when theyre back.

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Just in case - put up a new post with results and ranges. Sometimes members may add to their original post and not many others will see it in order to respond.

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Ive picked up the blood request ...whats been ordered is as follows

FBC

Ferritin

HBA1

TSH

U & E (na, k , Urea, EGFR (UE)

Vitamin D

Am i right in thinking its no good just checking TSH?

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I rang the doctors to ask why such as T3 & T4 etc was not included & they simply said they dont do them and that thier is only 1 box on the form to tick which is TSH.

so i asked a rather annoyed secretary what my last results were in October 2017 which flagged up the Vitamin D deficiency

TSH level 1.4

Vitamin D level 22

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Update :

I had my bloods done on tuesday, results are back in but as it stands all they tested for was

TSH

Vitamin D

Ferritin

FBC

Hbac1

My tsh level in october 2017 was 1.4

Vit D was 22.

ive just been contacted to say my results are back and need to speak to Gp as a couple of the results require an appointment. the receptionist did confirm the TSH was still 1.4 (had blood test at 10am & only drank water upon getting up) & Vit D was 44 she wouldnt tell me anything else so will have to wait until i see the doctor on the 17th.

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