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Thyroid UK
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Need to have a bit of a rant!

Hi everyone, just need to vent my spleen for a couple of minutes.

I have posted a few times in the last couple of months regarding my hypo/ hyper status, many thanks to all those who commented last time.

I was due to see an endocrinologist (diabetic specialist, of course!) a week on Tuesday and so had my bloods taken last Friday. My GP specified that T3 and T4 needed doing as I had displayed hyperthyroid readings on the last blood test.

I have just collected the results as I am seeing the GP tomorrow morning and they have not done the T3 or T4, My TSH has come back at 4.2 and I am getting more hypo symptoms by the day. Just as I expected I would.

Greygoose kindly gave me loads of information about being hypo due to autoimmune thyroid problems and how this can cause flair ups and temporary hyper symptoms. Thank you again as I fear I would have gone insane by now without your assistance and help from others.

I am definitely going to cancel the endo appointment now as I don't have Graves ( never thought I did have it to be honest!) and I shall go back to the GP and tell her how disgusted I am with labs that won't follow Dr's instructions, I had offered to have a private blood test done but she assured me that they would test all the things she requested, I hope she's as angry as me.

Rant over, wish I felt better, but I don't!

38 Replies
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It is good to inform your doctor (and also educate her too) of the tests not being taken. I think some labs (in order to save money) have been told that TSH and T4 are sufficient.

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They didn't even do T4! just TSH.

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The same happened to me, as in the lab just ignored the written request on the blood test card and did TSH and T4 only. I went back to a different GP (they change weekly, it seems) and he explained that there is no box to tick on the request on the computer. Nevertheless, he managed somehow but was puzzled as to why I needed the T3 test, "As T4 is the active hormone". Needless to say I put him straight on that dangerous misconception!

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My doctor was aware that I needed T3 and T4 doing and specifically wrote it on, but the labs in their infinite wisdom chose to ignore her request. You couldn't make it up!

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Oh yes, so was mine and it was clearly written on the blood test card. I checked as the nurse took blood. The lab just ignored it. I believe they are becoming as powerful as Big Pharma in decisions of this kind and some GPs seem frightened to stand their ground.

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It's getting beyond ridiculous, I suspect there's a conspiracy somewhere to keep us feeling unwell and on loads of different drugs to cope with symptoms rather than deal with the cause of our problems, but as I have already mentioned I am beginning to feel quite pessimistic again, or it could just be cynicism rearing its ugly head!

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Even if T4 were the active hormone, and T3 the storage hormone, you would still need them both done for comparison. The difference between the two gives a lot of information.

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Hi grey goose, you were a fantastic source of info last time I posted, so thank you again. Both my T3 and T4 were over range but in the correct ratio, so I think I am a good convertor from memory T4 was about 27 and T3 about 9.

I was expecting them both to be very much lower as my TSH has now gone to 4.2.

I can feel myself sliding back, my temp has started falling again and it is now 35.5 on waking, it did rise to just over 36 when I was registering as hyper.

Surprisingly,the most significant change is in how I feel mentally, my mood has changed and I feel low in spirit and generally quite pessimistic, I didn't realise just how bad it had got until I felt great for a couple of weeks just after everything started to calm down and my T4 was down to 22 and T3 to 7 ( just over range).

I'll update everyone when I've been to the GP.

Thanks again for your input before it was invaluable.

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Not surprising at all. The brain needs loads of T3, so if there's not enough to go round, you will get all sorts of 'brain' symptoms, from depression to inability to spell!

You're more than welcome to any help I can give you. :)

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Brain fog and other mental symptoms are my main problems. I just hope no one decides I have dementia before my new meds have a chance to reach optimum levels and kick in. I would bet if we could (magically) get an accurate number of people being treated for dementias who are really severely hypo the numbers would be staggering.

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Yes, I know what you mean. I would have got a 'diagnosis' of bipolar in my teens, if bipolar had been invented then.

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I agree. In fact with all my 'mental symptoms'- thyroid related anxiety, irritability etc. a friend who is bipolar suggested that might be my problem too. I am not but I can easily see where being treated for bipolar because some symptoms are similar to thyroid problems might be thought of by doctors before looking further. Bipolar is certainly easier for doctors to diagnosis and 'treat' with psych drugs rather than doing a thorough thyroid workup. I believe it's a case of the line of least resistance.

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Absolutely!

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Mine thought that too querying why my T3 was higher than the T4 he said "as T3 converts to T4". I take T3 only so said 'No doctor it is the other way around and besides I take T3 only, therefore T4 will be low and T3 higher.

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Do you think they get someone else to sit their exams for them? I know medics were always supposed to be drunk almost as often as agriculture students (when I were a lass), but really!

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Maybe they should pay the members of this forum to sit their exams. At least they will be 'properly' trained and knowledgeable. We have to read, ask question, plead for increases but get decreases due to the TSH being 3 or some such nonsense.

Even Dr Toft, who we were quite hard upon at times published the following:

healthunlocked.com/thyroidu...

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Anything is possibe. I also think there are many doctors who think now that they have finished school it's not necessary to pick up a medical journal and update themselves on the latest thinking and treatments in their field. Some also never learned to 'listen to the patient because they are the best source of information for effective treatment.' And some people may labor under the delusion that if they open their minds to new ideas their brains will fall out.

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Scary!

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You are now completely justified in ordering private testing and GP will be obliged to accept it

Make sure any thyroid test is done as early as possible in morning and fasting

You definitely need both TPO and TG antibodies tested too

Plus vitamin D, folate, ferritin and B12

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Hi slow dragon I have had T3 and T4 tested before on the NHS, it revealed that I was very hyper, after years struggling with hypo symptoms and rising TSH ( obviously not high enough for an NHS diagnosis!) it completely freaked the doctor out as they thought I needed carbimazole I have had a private test about 2 months ago which showed my Hyper figures were coming down quite quickly, hence the suspicion that it was a flare up due to the thyroid being attacked. My antibodies have never been high but I believe that they do not have to be high to have Hashi's

I suspect the GP will be as annoyed as me as she seemed quite on the ball, and she wanted to get to the bottom of things before starting me on anything for Graves.

I do have another blood test at the ready, it's costing me a fortune! but I am going on holiday next week so I think I will wait until I get back before I do that test, unless anyone thinks it would be better to do it immediately.

My other things , Vits, ferritin, folate, B12 were ok, not optimal but not dire, D needs supplementing as low.

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Then suggest you supplement to get vitamins optimal before retesting

Can you add actual vitamin results and ranges

Vitamin D aim to improve to around 100nmol

How much are you supplementing?

Folate and B12 might be better towards top of range. Taking a daily good quality vitamin B complex, one with folate in (eg Igennus Super B or Jarrow B right)

Ferritin, eating liver or liver pate once a week should help improve

Sounds like Hashimoto's rather than Graves. Astonishing how often doctors misdiagnose these two

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Hi slow dragon,

I'll just list all the recent results I have had so far and the dates.

6th April 2018

TSH 0.05 (0.3-5.00)

FT4 27.5 (11-22)

FT3 9.7 (3.10-6.80)

B12 569 (181-910) I thought this looked ok and didn't get it retested.

Folate 10.6 (>5.40)

Ferritin 109 (10-291)

Vit D 38 (75-150) Low . I have been supplementing with D3 1000iu + K2 Mk7 3000iu daily. I also take CoQ10 300mg .

I have some B Complex vitamins but have not been taking those as they contain Biotin and I read they can skew the test results, but I can start them.

I retested privately because these results seemed totally contrary to what I had been initially expecting due to my hypo symptoms which had been there for months ( I did have a week of feeling very jittery and on edge which must have been I was most hyper).

17th April

TSH *0.006 (0.27-4.20)

Free Thyroxine *22.9 (12.0-22.0) FT4 I presume

Total Thyroxine (T4) 111.0 (59.00- 154.00)

FT3 *7.01 (3.10-6.8)

TGA 11.5 (0.00-115)

TPO 11.7 (0.00-34)

Results today 13th June

TSH 4.2 Normal !

For comparison here are my results from May 2017, it may help to complete the picture.

TSH 2.97 (0.27- 4.2)

T4 total 80.4 (64.5-142.0)

FT4 14.85 (12-22)

FT3 3.6 ( 3.1-6.8)

TPO 16.4 <34

TGA 12 <115

B12 475 (< 140 Deficient, 140-250 Insufficient, >750 consider reducing dose)

Folate 45.4 (8.3-60.8)

Ferritin 111 ( 20-150)

I do eat well.

I have been experiencing hypo symptoms on and off for a number of years and have a very strong family history of Hypothyroidism.

Mother and 5 out of 7 aunts (on both sides of the family) are/ were hypothyroid, most were diagnosed and regained their health when doctors listened to their symptoms rather than looked at a blood test. My mother being the youngest of the lot struggled for years to get a diagnosis and that was only when her cholesterol reached 12!

I shall go armed with the facts to the GP tomorrow, wish me luck.

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The thing with Hashimoto's, it it doesn't matter how good our diet is. We are, what our gut absorbs, rather than what we eat

Yes biotin can affect test results. So remember to stop any supplements with biotin in 3-5 days before any blood tests

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Your results almost certainly suggest Hashimoto's, not Graves

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. 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 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

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood

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Thank you fo all those links, I shall plough through them tomorrow, I have been to visit a friend or I would have replied sooner.

I have had coeliac blood test a couple of months back and was told it was normal, I will ask for the actual results tomorrow too, my eldest son was diagnosed coeliac about 18 months ago and we had the devil's own job getting a diagnosis ( it took almost 4 years and many fruitless trips to doctors and specialists) and believe me it was not for the want of trying.

My son has been left with IBS and severe anxiety due to no one taking his symptoms seriously, it ruined his first year at Uni and he had to defer for almost 12 months, he is no longer the outgoing carefree person he once was, I only hope time will heal him along with his GF diet.

I do have low stomach acid but was prescribed omeprazole by my old GP who would have been happy for me to remain on it indefinitely, when I researched it a little more I suspected I was suffering from low acid and a poorly functioning sphincter valve was allowing the stomach contents to enter the oesophagus causing the reflux. Apple cider vinegar seems to keep the problem at bay, and I would prefer that to taking omeprazole any day.

Thanks again for responding it is much appreciated.

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As your son is coeliac, he is likely to have low vitamin levels unless supplementing. May also be more likely to have autoimmune thyroid disease

Suggest you get him full private Thyroid testing including thyroid antibodies and also vitamin D, folate, ferritin and B12

scdlifestyle.com/2012/07/wh...

Coeliac often low in magnesium too

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I have just had his thyroid tested, his results show a marked improvement prior to those taken before he was diagnosed coeliac, again his GP refused to retest any vitamins or his thyroid because his previous results were considered "normal" I thought a TSH of 3.2 ( 0.5- 4.)and a FT4 of 13 (12-22) were not good enough. He had enough going on at the time so I thought it best to not stress him out any further with more tests.

His test last week gave the following results

TSH 1.7 (0.5-4.5)

FT4 21 (12- 22)

FT3 7.0 (3.0- 6.8)

His Vit D was better than mine at about 55

B12 370 ish I don't have the exact figures to hand.

His ferritin and folate were just under halfway through the range.

He has been supplementing and will continue to do so, I was contemplating getting a B12 spray and a B complex.

He is due to spend a year abroad next academic year I am hoping this goes well as it may help him to regain his confidence if he has a good year.

Do we ever stop worrying about our children?

I have probably read every book going on coeliac disease and I was aware of the connection between the auto immune diseases, I don't think he could have coped with yet another thing on top of his digestive issues last year which is why I have waited until now to get a comprehensive test done.

I will keep an eye on him over the summer and hope everything improves from now on. Must go to bed I'm dead on my feet.

Thanks for all your help, much appreciated.

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Glad to hear he's improving now on gluten free diet

Did you also get both TPO and TG thyroid antibodies tested?

Vitamin D, assuming UK nmol units, is better at least above 80nmol. Around 100nmol may be better.

Good quality B complex maybe good idea too.

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Thank you, yes I did get his antibodies tested and they were both very low below the range, although I am aware that does not really mean anything because mine have never been high but I am convinced I have Hashi's.

He is going to be studying in a Mediterranean country so hopefully his supplements and the sunshine should help a little.

Off to see my GP shortly, so I hope that goes well.

I will update everyone later, sorry if I'm boring the pants off everyone!

:)

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You can have Hashimoto's and never have high antibodies

An ultrasound might confirm diagnosis

thyroidpharmacist.com/artic...

Good luck 😉

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Hi all just thought I'd update you on my doctor's visit.

I could cry with relief, the GP was brilliant, I am beginning to wonder if she has thyroid issues herself.

She agreed that the endo appointment would be a complete waste of time so I have cancelled that.

She also said that because, I had swung back to hypo that it was highly unlikely that I had Graves as the TSH would have remained suppressed in that instance. She said it is highly likely that I had an underactive thyroid probably autoimmune even though my antibodies have never been high.

She was pretty annoyed that my T3 and T4 had not been done and she said that the labs are doing it all the time despite complaints from the GP's, she thought it might have been due to a directive from the CCG, and agreed that restricting blood tests was completely counterproductive.

She has agreed to start me on Levothyroxine, I asked if I could begin on 50 mcg but she said she would not be allowed to prescribe more than 25mcg to begin with, I will retest my bloods in 6 weeks ( I have said I will use my private BT as it will give a clearer picture than just TSH alone, she also said it shouldn't be necessary but it will save aggravation, I need to use it as it's time sensitive so I don't really mind).

She has also said the aim is to get TSH to 1 or slightly under and for me to have no more hypo symptoms, and she will increase in increments until that is achieved.

To anyone else suffering out there, don't give up hope there are some good GP's out there, and this one is quite young too.

Thanks again to everyone who has commented and offered support.

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Glad you got somewhere

Be warned 25mcg can make you feel worse, you may have to grit your teeth to get through first 6 weeks

Avoid being prescribed Teva Levo (unless lactose intolerant) as many patients don’t get on with Teva

Once you get a brand that suits you, try to always get same brand (different brayare not bio equivalent)

You may need to try different pharmacies to get brand you need and watch out for brand change as dose is increased

Standard NHS guide line is to start on 50mcg unless over 50 years old, or heart condition

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Hi again, I am over 50 (57 ) and I do have a heart murmur, but it s benign ( slight mitral valve prolapse ) and I am not on any medication, it was picked up by accident 20 years ago, when it was checked recently it had not changed.

I am aware that 25mcg might make me feel worse but at least I seem to have fallen lucky with this GP.

I have been given Mercury levo, hope that agrees with me!

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Mitral valve is often linked to Hashimoto's, suggests you may have had this a very long time.

I had MPV discovered soon after Hashimoto's diagnosis 25 years ago.

verywellhealth.com/mitral-v...

webmd.com/heart/news/199911...

Assuming Mercury Pharma Levo agrees with you, try to stick on it at each dose increase.

Mercury Pharma is my preferred brand. Some get on with it, others don't. It's all very individual

Similarly the time of day you take Levo is individual preference

Important to always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

No other medications at same time, anything else at least 2 hours away. Some like iron, magnesium, vitamin D or HRT at least four hours away

Best to get a weekly pill dispenser and keep by the bed. It's incredibly easy to forget if you took it or not otherwise

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Thank you so much for that info, I must be honest I had no idea MVP could be an indication of hypothyroidism.

My MVP was picked up when I saw a doctor for a chest infection when my youngest son was a baby, I had had two pregnancies quite close together and it frightened me to death when the doctor asked me how long I had had my heart murmur. I honestly thought it would kill me.

Nobody listened to my heart at all during either pregnancy and I had had an experimental anaesthetic in my early 30's so I was examined very thoroughly before that and it wasn't picked up then so I assume I developed it at some time between my early 30's and age 35-37 when I had my two children.

Since the children were born I have had some really low times when I was convinced I had become hypothyroid but blood tests always came back within the normal range, but not especially good, since going through the menopause things have got progressively worse and I started the menopause quite young ( things started going haywire when I reached 40, so perhaps just as well I had my children when I did or I may not have managed it!)

With hindsight ( always a wonderful thing) I think I may have had flare ups and times when I have gone overactive as I have experienced similar, but not so severe, symptoms of hyperactivity before.

I know that the 25mcg dose may make things worse to start with, does that means I will have the same symptoms of hypothyroidism but just a bit worse or does it mean I will develop different symptoms?

I am hoping that the Mercury brand will suit me, but again how would I know it didn't would it make me nauseous or something else?

Sorry for the questions you have been so helpful, so thank you again.

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Small dose can be enough to lower the TSH (signal from pituitary that tells Thyroid to work ) but it's too small a dose to offer replacement hormones

So you may feel slightly or a lot more tired

Some people find different brands make them itch or have hives. Some brands have acacia powder in. Many people with Hashimoto's have food intolerances. Acacia can be one of them. Obviously gluten is most common, dairy second

Main reason for sticking on same brand is they are not effectively the same dose if change brands

See last paragraph

academic.oup.com/jcem/artic...

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Thank you again SlowDragon, I will try to keep to the same brand, and monitor any changes, when I picked up the levothyroxine I asked them to check that they were GF tablets.

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All UK Levothyroxine is gluten free 😀

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Thank you I wasn't' aware of that, thought I'd better ask to be on the safe side.

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