Thyroid UK
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I feel so let down and Angry but I'm so worn out now... I haven't the strength to argue with my GP practise anymore!

I feel so let down and Angry but I'm so worn out now... I haven't the strength to argue with my GP practise anymore!

Hello everyone.

I have been following you guy's for about 6 months now and I have been amazed at the level of good quality information and help that I see being given to people in obvious desperation and confusion as to where to turn to next.

Well, here goes, my time has arrived to be made to feel that there is some hope !!

I am a 58 year old male who was told by my GP 7 years ago that I have an 'Underactive Thyroid and that although it is not as common in men it can be successfully treated with medication' well, if only I knew then what I know now... I would probably still have a very good job and a very loving partner !

For 7 years I have been told that the 225mcg/day of Levothyroxine is doing a great job as my bloods prove..so, all these symptoms I was and am experiencing must be down to me getting old . At no point was I ever told that I had something called Hashimoto's and this was the cause of my dis-functioning Thyroid, at no point was I ever informed that another drug was available at the time (Liothyronine) T3 at no point was I ever referred to an Endocrinologist I was told 'they will only treat the disorder in exactly the same way'! As one of the stupid Male species I just carried on and tried to push through it all until bang...earlier last year I just ran out of steam at work and had a break down!!

At this point you need to let me know if I am babbling on a bit but it is because of this Forum that I discovered the truth and which led to me having a whole series of bloods done through medichecks, another eye opener when I got the results back which, by the way only took 3 days for the whole process.

Results are below and I would appreciate any feedback you may be able to give.

I could list the symptoms I have suffered from over the years but I get the feeling the majority of you guy's know exactly what they are. I need Psychiatric help for my depression according to my GP's ..LOL !!

The first set of readings are from my very first test 7 years ago:

28/10/2010

TSH - 45.88mu/L (0.35 - 5.5)

Free T4 Level - 6 pmol/L (9 - 21)

Erythrocyte Sedimentation rate - 33 mm/h (<20)

03/01/2018

ENDOCRINOLOGY

Thyroid Function

THYROID STIMULATING HORMONE *0.071 mIU/L (0.27 - 4.20)

FREE THYROXINE 19 pmol/L (12.00 - 22.00)

TOTAL THYROXINE(T4) 107.0 nmol/L (59.00 - 154.00)

FREE T3 5.83 pmol/L (3.10 - 6.80)

THYROGLOBULIN ANTIBODY *>4000 IU/mL (0.00 - 115.00)

THYROID PEROXIDASE ANTIBODIES *515 IU/mL (0.00 - 34.00)

Vitamins

ACTIVE B12 61.7 pmol/L (25.10 - 165.00)

FOLATE (SERUM) 5.76 ug/L (2.91 - 50.00)

25 OH VITAMIN D *17.1 nmol/L (50.00 - 200.00)

Interpretation of results:

Deficient <25

Insufficient 25 - 49

Normal Range 50 - 200

Consider reducing dose >200

BIOCHEMISTRY

Inflammation Marker CRP - HIGH SENSITIVITY 3.7 mg/l 0.00 - 5.00

Iron Status

FERRITIN 360 ug/L 30.00 - 400.00

If anyone can interpret the above I would be grateful because from what I can see I should not be feeling as bad as I am. I have worked 41 years of my life and have been a very fit, Rugby playing, Parachuting, mountain climbing fit person who was looking forward to retirement but I feel worse now than at anytime of my life. One consolation is that after all this time people are starting to recognize that I am not well and that explains alot...and as far as i'm concerned most of that is down to this forum and its pages of advice.

Well there is a light I hope as I have an appointment with Mark Vanderpump next week, fingers crossed for some proper guidance and monitoring. (thank you family for the donations).

So War and Peace chapter One is finished. (don't worry only joking) I will not post anymore unless people want to hear it.

Thank you all

Steve

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Hi there, so sorry it’s been such a rough time. :(

The thing that leaps off the page with those recent results is your Vit D level. Please tell me your doctor has prescribed loading doses of Vit D? Because if he/she hasn’t, then they’re rubbish at their job. Low Vit D - especially as low as yours - will leave you feeling awful.

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Hi

No Prescribed Vit D..according to GP the guidelines state that my GP practice can only prescribe Vit D with Calcium and I cannot have calcium because in a past test my Calcium levels were High...Didnt know until last week my cals were high. So buying my own.

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Good idea - but your doctor needs educating! He/she obviously read the wrong guidelines!

Clutter’s Advice on the correct dose of Vit D is sound (she’s a star :) ),

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Jaffa-cake,

How high was your calcium?

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Hi Jaffa-cake,

Your thyroid levels are good. TSH is mildly suppressed, FT4 is in the upper quadrant and FT3 is in the upper third of range. You appear to be optimally dosed and conversion is good so I'm not sure there would be any benefit in adding T3 to Levothyroxine.

Thyroid peroxidase and thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

Active B12 >35 is very unlikely to be deficient.

Folate is low in range. You might want to supplement 400-800mcg folic acid or methylfolate to improve folate.

Vitamin D is severely deficient. Your GP should refer to local guidelines or the cks.nice.org.uk/vitamin-d-d... Do NOT accept a prescription for 800iu which is a maintenance dose prescribed after vitD is replete >75. My GP prescribed 40,000iu daily x 14 followed by 2,000iu daily x 8 weeks which raised vitD from <10 to 107. Vitamin D should be taken 4 hours away from Levothyroxine.

Ferritin can be high due to inflammation in the body and CRP 3.7 is a bit high in range indicating inflammation. Has your GP done a full blood count recently?

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Thanks for the info Clutter..No, not been asked to have bloods done at all..Maybe having them done privately has got there back up!

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Jaffa-Cake,

Has your doctor seen the private results?

Can you post your last calcium blood test results and ranges?

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23/10/2017

Calcium 2.51 mmol/L (2.2 - 2.5)

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Jaffa-Cake,

Your GP should order a parathyroid hormone blood test + another calcium blood test at the same time to rule out hyperparathyroidism. The tests should be done in the phlebotomy dept at the local hospital because they are time sensitive.

I would stop supplementing vitD for now as this can raise calcium.

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Oh, Doctor has seen private bloods, I left them a copy they had a meeting about them and the consensus was that I am severely Depressed..Honestly, what do you do with them !

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Jaffa-Cake,

Maybe tell them that vitamin D deficiency and high calcium are not signs of Prozac deficiency and should be investigated and treated.

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Severe deficiency in vitamin D ( with or without a deficiency in other vitamins and minerals) causes depression like symptoms particularly unspecific body pain especially in the joints, long bones and muscles plus fatigue, brain fog, hair loss, skin problems and a lowered immune system meaning you catch more things like colds and anything else you personally are prone to.

All the NHS websites have lists of symptoms and it may be worth going to one site and giving them to your idiot of a GP e.g. - patient.info/doctor/vitamin...

The reason I say your GP is an idiot is the Chief Medical Officers of all the UK nations have been banging on about vitamin D deficiency for years, and every area has guidelines which are normally from a local NHS Trust.

As already stated you need to have it investigated why you have high calcium.

BTW there have been other posters on here with high calcium with reasons for it known e.g. medication - they were only allowed a maximum of 1,000IU of vitamin D3 per day. So as Clutter stated you need to stop supplementing and have the cause of your high calcium investigated then once you know you should be allowed to supplement under supervision. If the GP wasn't such an idiot they could do that themselves but I guess you are costing too much of their budget.

Oh and if your deficiency continues so your level gets into single figures you can break small bones e.g. fingers or toes just doing everyday things. I know someone who broke a little finger when she lifted a book.

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Thanks for all the good stuff bluebug really appreciated..I will look at moving to another practice.

Trouble is, until I was diagnosed with this I never went to the doc's so I didn't realise how bad they were, although my partner complained to me about them enough when they did not deal with her issue's very well.

I do not like to get anyone in trouble but have been driven to despair and would sue for incompetence if I thought it would get anywhere.

I will be careful lifting those books :)

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Your vit D and folate are pretty rubbish. You need more folate for the B12 to work properly - it's very low in range. As Jazzw says, the low D will make you feel rough in various ways.

So sorry to hear of the problems caused by your long term ill-health.

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Thank you for your info and concern Hillwoman.

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Are you paying to see Vanderpump? He used to be president of the British Thyroid Association, not necessarily a good thing, and he is known in some circles as Vanderpompous. I hope you're not disappointed.

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Thanks for the SP SeasideSusie...My family are paying.

If I am disappointed can anyone recommend a good Endo, anywhere South of Birmingham

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Email Dionne at tukadmin@thyroiduk.org for the list of thyroid friendly endos. See who you can manage to travel to and then put up a new post asking for feedback from members.

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Thank you SeasideSusie I will do as you suggest.

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As Clutter said, how high was your calcium?

There’s a possibility of hyperparathyroidism when Vit D is low and calcium high. Might be worth mentioning that calcium level to Mark Vanderpump.

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High calcium is not a trivial finding and your doctor should not just ignore it. It can be caused by all sorts of conditions, many of which are extremely serious. I would be interested in knowing "How high is high?" with respect to your calcium. Is it high in range or is it over the range?

Taking vitamin D could increase your body's absorption of calcium from your diet, and since your calcium is already high you should make sure you test your calcium regularly. If your calcium is already over the range I would be wary of taking vitamin D. You need the high calcium looked into and the cause found and dealt with.

The first thing you need to look into is hyperparathyroidism. This website is excellent and is well worth reading - you could find that some of the symptoms and health problems you have are caused by your high calcium :

parathyroid.com/

Don't let your doctor ignore your high calcium. Get it followed up!

P.S. I have no medical training and I don't know anything about hyperparathyroidism other than it exists and is serious.

Edit : Just seen your calcium result. It shouldn't be ignored, it needs to be followed up.

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I doubt Vanderpump will be any help sadly

I suggest you simply selftreat with NDT ...it is the only med that makes life normal fir my husband , daughter and grandsughters

None of them are well on levothyroxine or liothyronine or any combo of the 2

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Could be an option reallyfedup123.

I seem to have many issues with bloods it is hard to know were to start that is why I would really like someone to take it by the horns and monitor and treat me as a Dr should

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See my message to you ...my recomened specialist will soon sort out your GPs

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When vitamin D is very low, as your is, then normally would expect calcium to be low too

How long ago was High calcium test?

If recent then read up about hyper parathyroidism - The Norman Centre in Florida run excellent website

Also vitamin-D-pro.com is great app

As is CalciumPro.com

Both made by Norman Centre to aid diagnosis

Both cost couple of quid to download- put your results in and it gives expert opinion - better than your GP perhaps ?

Personally I think B12 and folate are a bit low

Hashimoto’s you very likely need to be strictly gluten free

Read lots of my replies to others for links

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Thank you for the Heads up SlowDragon..I will follow up your recommendations.

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I would like to thank one and all for your understanding, advice and information given in such a short period of time. I am now even more enlightened as to the complex and daunting disease we all suffer from:

My favorite saying:

"Don't waste your time looking back, your not going that way" !!

Thank you all

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links for gluten and Hashimoto's

All excellent website with masses of info

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

Parathyroid

parathyroid.com/parathyroid...

calciumpro.com/

Insist on GP running test for hyperparathyroid if your high calcium and low vitamin D are suggesting it when you put your results in the calcium app

Getting parathyroid test privately is very difficult as its a time sensitive test.

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Beautiful..Thanks

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I had severe vitamin D deficiency and it was truly awful It made me very depressed and two of my ribs spontanously broke - ouch! - and I am very sorry to hear of your suffering. It looks like there has been plenty of very sound advice given from everyone here. I hope you soon find out what is wrong and get it sorted fast ☘️😉🍀

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Thank you for your thoughts TSH110..I hope you feel better now. Your right superb people and advice on here

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Hi Steve good luck with Vanderpump!

My reading is Antibodies high - do you do any autoimmune protocol or gluten free?

Technically your TSH is suppressed but the T4 and T3 are good.

Vit D low - needs to be higher and will explain why feel unwell still worth reading up on

Vit B many say ideally should be higher in thyroidies and in top quartile

There are some great post comments on Vit B D ad antibodies that I would read.

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Thanks Shingleway

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I had extremely low vitamin D level - just 3. !! I was referred to a metabolic bone specialist due to the major bone in my leg breaking without any trauma being inflicted. My calcium level were high too. My parathyroids were checked. This was NOT the cause. When your vitamin D levels are very low your body releases calcium from your bones to compensate. I was given very high loading doses of vitamin D that had to be given at the hospital. My symptoms were pain/aches- barely being able to walk, extreme fatigue, pain in my pelvic area, unable to think straight, no energy, non restorative sleep & on the fringe of developing osteomalcia due to lack of vit D. I felt dreadful. I was eating a diet very healthy in calcium but my body did mot absorb it as their urine test showed. You need vitamin D to absorb calcium. Vitamin D3 transformed this. I am now on the standard nhs vitamin D supplement & my vitsmin D has stayed at the top of the range. All my symptoms went with the loading doses of vitamin D3.

So please dont underestimate the effects of low vitamin D. You need to challenge your GP. Get them to check your parathyroid glands if they wont refer you BEFORE you supplement with vitamin D3. Make sure when you do start supplementing that its with K2 to ensure calcium uptake from vitamin D goes to your bones & not your organs.

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Thank you for your valuable words waveylines I will digest and then add to the increasing collection of brilliant advice, experiences, wisdom and kindness

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Did you get the name of the Consultant from Thyroiduk.org.uk?

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Yes, I am pretty shaw I did shaws (sorry) but am now wondering if I have made the right choice.

I still have a couple of days to cancel but it seems to me it's all a bit of a lottery.

My thinking now is to find a good Endo that is linked to one of my areas NHS hospitals. I would have an initial consultation private and then get moved to NHS for follow up. if poss

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