Am I hypothyroid or was I Misdiagnosed? - Thyroid UK

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Am I hypothyroid or was I Misdiagnosed?

Essexmum
Essexmum

Thank you to everyone who has provided advice so far, it's been really helpful and I am now supplementing iron & using a vitamin D spray to increase my levels. I went to see a private endocrinologist as advised by the NHS endo to request a private prescription for T3 which I now have.

I paid for the privilege of the consultation last night which was rather disappointing as the Consultant believes I was misdiagnosed, said I am not hypothyroid and asked if I would stop taking the medication for 2 weeks to get a clearer blood tests. He said my antibodies are showing in the normal range which is usual when over medicated for a long time (my gp over medicated me since I was diagnosed and I have not felt well since). He said its a shame an antibody test was not carried out when the diagnosis was made. I checked and there was an antibody test and I have included my original tests below. I was not on medication at the time for the January results or the March results. I did refuse to stop taking my medication but he has made me feel very uneasy about my diagnosis.

My blood tests back in January 2010 are as follows:

Free T4 level: 14.8 (range 10 - 22pmol/L)

TSH level: 4.76 (range 0.4 - 4mu/L)

Blood results in March 2010

Free T4 level: 12.2 (range 10-22pmo/L)

TSH level: 5.97 (range 0.4 - 4mu/L)

Thyroid peroxidase antibody level: 91 (>75 positive)

When my son was born at the end of 2008, I lost the baby weight and went back to 9 stone and I felt well. I went back to work full time, changed my job and in September 2009 I felt unwell. At first I put it down to working full time, a change of job and my hormones settling after having my son. My symptoms at the time was an increase in weight by 2 stone over a short time (never been over weight before), hair falling out and I had to lay it on the side of the bath when I had a shower, extreme fatigue, tearful, kept forgetting things, losing things and struggled to remember important things, difficulty in walking, lethargic and I was fainting.

Please can someone advise, am I hypothyroid?

The reason I ask I came out of the consultation feeling like I was imagining it all and I need to pull myself together. I wouldn't want to take medication if the diagnosis is incorrect but I believe the results above indicate an underactive thyroid.

15 Replies
oldestnewest

They do indeed indicate that you have an under-active thyroid, and that you have Hashi's. That endo is talking out of the back of his head. You are hypo when your TSH hits 3.

Being over-medicated has nothing to do with antibodies being in the normal range. Antibodies fluctuate all the time.

This endo is probably an NHS trained endo that does a bit of private work on the side. But, he still tows the party line, and likes a TSH to be over 10 before he will diagnose. I'm afraid you wasted your money, there! Did he at least test your FT3? You could have got that done much cheaper with one of the companies mentioned on the TUK main-page. :(

Essexmum
Essexmum
in reply to greygoose

Thank you, I felt I had wasted my time and thought I was losing the plot. You're right he works for the NHS and operates a private clinic in the evenings. I was hoping to keep the consultants on side because the NHS endo appeared supportive so I tried to do it properly and get a private prescription. The consultant last night wasn't happy to find the NHS are willing to monitor me because I wouldn't being seeing him again, although he said it wasn't about the money. Thankfully, I had seen some posts about doctors asking patients to stop their medication, so I refused outright. It was quite an ordeal if I'm honest and I had to fight my corner. NHS are arranging a bone density scan and he said if I have osteoporosis then I will not be able to take T3. I'm not sure how that works but one step at a time.

He didn't do blood tests as I had them done through my doctors as I asked the nurse who is my neighbour, so that helped.

I'm currently on levothyroxine 125mcg one day 100mcg the next.

My recent blood results are listed below and the consultant said I need to be on Levothyroxin 50mcg and 10mcg T3. He said to reduce levo to 100mcg and take 10mcg T3 initially and if symptoms of palpitations etc, then to reduce Levo to 50mcg. I did ask if I should reduce levo to 75mcg before going straight to 50mcg to which he agreed. I asked if it would be sensible to split the T3 into 2 small doses to which he said that would cause me less symptoms.

I have more faith in the information given on this forum as its based on knowledge and experience.

My thoughts are to order the T3 and in the meantime lower my levothyroxine to 100mcg and when I receive the T3 add in 5mcg of T3 and then reduce the Levo again to 75mcg and increase T3 to 10mcg (taking 5mcg mid morning and 5mcg around 2pm?) with a view to reduce the levothyroxine to 50mcg based on symptoms. I'm not really sure but the consultant was of no help really and I'm just trying to apply some logic and take it slowly.

T4 level 21 (range: 12 - 22)

T3 level 4.2 (range 3.1 - 6.8)

TSH level: <0.05 (range 0.27 - 4.20)

TPO Antibodies level: 11 U/ml (<34U/mL = negative)

Serum parathyroid hormone: 3.5 pmol/L (range 1.6 - 6.9)

SlowDragon & others have given me guidance on my Vitamin D and iron levels. My B12 and folate are good as on folic acid tablets and I have B12 injections for nerve pain. I will buy the K2 and MK7 vitamins as well.

I'm waiting on my blood test results for magnesium and zinc to see what my levels are.

If you can help with adjusting the dosage that would be really helpful to me. The endo said he's only concerned with the tsh but from what I've read it's not all about the TSH.

Thanks again.

SeasideSusie
SeasideSusieAdministrator
in reply to Essexmum

Essexmum

I will buy the K2 and MK7 vitamins as well.

Just want to clear up, that is Vit K2-MK7 and not two separate vitamins :)

Don't be too quick to reduce Levo. Taking T3 tends to reduce it anyway. There's a lot of trial and error and tweaking of doses of Levo and T3 to get the balance that suits you. If it was me, I'd just reduce to 100mcg Levo daily to start with, add the T3, then give it a few weeks and see where your levels lie and make further adjustments at that point if necessary.

When I was tweaking my doses, I took Levo down too far and my FT4 plummeted to bottom of range and I was very unwell so I had to increase back again. I now know that I need both free Ts around 75% through range.

Oh I see, I understand now about the FT4 and the vitamins!

I hadn't realised taking the T3 reduces the T4 and thought the T4 would need to be decreased by quite a lot. Good to know I need to be careful on reducing the Levo too much. Thank you for the clarification and advice.

I have ordered the T3 and while I feel a bit cautious, I'm hoping it will make a big difference in the way I feel but appreciate it may take a while to get the balance right.

You will find on the forum suggestions of reducing your levo. by 25 mcg for every 10 mcg of T3 added...I did this pro rata for 25 mcg of T3 and my FT4 went down by 10 to 12.70, but so did my FT3 ...went down by 0.2 to 4.57. TSH went down from 0.175 to 0.015. So don't be too eager to drop your levo. as might then have to re-add it!

Yes, you would probably be better on lower levo and some t3. TSH-obsessed endo is not useful.

greygoose
greygoose
in reply to Essexmum

he said if I have osteoporosis then I will not be able to take T3. I'm not sure how that works but one step at a time.

That's just more rubbish. Ignore it.

Glad you refused to stop your levo. I really don't know why they do that. There's no logic behind it. Seeing your levels at diagnosis should be enough for him. But, they're so damned arrogant!

I agree with Susie about reducing the levo. One reduction of 25 mcg should be enough. You can reduce it further at a later stage if necessary, but an endo talking about reducing levo to stop symptoms of palpitations… Oh dear.

And, yes, starting on 5 mcg would be much better than 10. Let your body get used to it slowly. You can increase to 10 after two weeks.

I don't like the idea of the folic acid tablets. If you are having B12 injections, then you ought to be taking a daily B complex to balance the Bs. Get one with about 400 mcg methylfolate and that will be better for you and bring your folate up nicely.

Not much point in testing magnesium. It will always be in range due to the way the body handles magnesium, maintaining the level in the blood. But that doesn't mean you're not deficient. Most people are because soils are depleted. And, as you're hypo, even more reason for you to be deficient. Just take some.

Finally, an endo that only goes by TSH for a patient taking T3, well, that's the pits! The TSH won't tell him anything. He - or you - needs to test the FT3. That's the most important number. I really wouldn't bother seeing that endo again, if I were you. :(

Essexmum
Essexmum
in reply to greygoose

Thank you, I was shocked at the endo's treatment & def won't be seeing him again. I got the feeling he was trying to scare me from taking T3.

I'm currently taking pyridoxine (b6) which was prescribed years ago when diagnosed as hypo (not sure why b6), so I'll take a b complex and stop the b6 & folic acid tablets and I'll get magnesium as well.

I'll go in line with your suggestion for the dosage. Just grateful for the advice.

It's a shame the treatment from Gp's and endo's is generally so poor.

greygoose
greygoose
in reply to Essexmum

Yes, he probably was scaring you off T3. They don't understand it, so they don't like it. But he's probably the one that's scared. The NHS as a whole has no understanding of the thyroid, its problems or the treatment thereof. They just don't do it in med school!

You were hypo when diagnosed. No free t3 done which is the most important one

Than you for all your help & to everyone else. The support & guidance is such a huge help.

shaws
shawsAdministrator

When you have blood tests for thyroid hormones the test always has to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of thyroid hormones and the test and take afterwards.

This helps keep the TSH at its highest as doctors are apt to adjust according to the whereabouts of the TSH and T4. I doubt they have heard of FT4 and FT3 which are more informative.

Taking food before a blood test would reduce the TSH.

Always get print-out for your own records and post if you have a query.

Essexmum
Essexmum
in reply to shaws

Thank you Shaws, this is really helpful. I feel quite foolish trusting my gp over the years & realise I can take responsibility for my health and feel more comfortable to do this with the help that you and all the others have kindly given me. I do browse old posts on the forum which also helps build my knowledge. The information is invaluable and I also received personal messages too which has been a big help.

shaws
shawsAdministrator
in reply to Essexmum

Before I was diagnosed hypothyroid was a word that had no meaning at all.

It isn't until we are finally diagnosed and then discover we aren't improving that we do an online search and find there are thousands with similar symptoms/problems due, mainly, to the modern way of diagnosing/treating. I wasn't diagnosed at all by any of the doctors I complained too.

Why wouldn't we trust doctors? My mother did and followed the advice of the GP with the result that she developed cancer and died due to completely wrong advice.

Little did we realise what was ahead for the whole family. We all took the doctor's advice to heart and believed doctors knew best about everything to do with ill-health. Never again.

Hi Shaws, I'm sorry to hear about your mother, it's awful the way we and our loved ones are let down.

We trusted the Gp, my mother was unwell and given a tube of cream for the pain in her bones and told at least you don't have cancer. Unfortunately, diagnosis took a couple of years, she did have cancer and a few days after being diagnosed my mother passed.

Your so right about trusting the Gp's, my sentiments too.

The support here is giving me the confidence to help myself. I have started sharing information that's here with friends & colleagues who are feeling unwell on levothyroxin. They have now requested copies of their blood tests as they have been told their test results are normal. It's no surprise, they are not normal.

Thank you for your support.

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