Thyroid UK
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NHS staff issues, thyroid question and my thyroid journey so far

Hi everyone,

I'm very new to all of this and only been diagnosed 'officially' with auto immune thyroiditis a few weeks ago. My story of confusion begins a few years ago when during a pre operation assessment(for something not relating to thyroid) revealed a TSH level of 20 and hospital referred me back to GP.

Upon taking the Levo doc started me on I started to get symptoms not experienced before like bloating, more irratible and angrier than usual and some weight gain, bit tired and such. Called doc to advise something was up and was told nothing wrong and to just carry on. I continued like that with odd symptoms that came and went while some persisted and got gradually worse until several months ago when I started thinking why is my body doing what its doing and I feel worse now with more symptoms than I started with before the medication. I had several days where I was displaying more symptoms than usual, even moving hurt and I went to docs.

while waiting for my appointment I started researching online trying to find any information to suggest I was missing something or doing something wrong. I'm not the healthiest of people but I do want to change that.

I thought I was doing good in trying to help myself online through reading some medical research, charity websites and other material but the reaction I got was not expected at all. The doctors do not like this in my surgery and all the staff including the hospital seem to get so twitchy about giving me my personal data or anything that educates me in looking after myself properly(other than taking pills. Surely there's something I can do to help myself in addition to taking the tablets.

I have had to be very forceful with GP surgery staff and hospital staff to get exact test results but I have them and a diagnosis of auto immune thyroiditis, not sure what that means though, the doctor seemed to be unable to explain anything other than the usual thing any doctors do when talking to me about my thyroid.

Doc has tried to suggest I have fibromyalgia when complaining of still having hypothyroid symptoms several nurses over the past year have said taking mini pill/shaving is causing skin problems but I don't take it anymore, stopped shaving and it was still getting worse getting fed up I asked for formal diagnosis for what was causing the problem with thyroid.

All my lab results came back as 'normal' only one that came back as above range was the thyroid antibody test which led to the auto immune thyroiditis diagnosis. Is this the same thing as hashimoto? She seemed to get flustered when I started asking questions and just kept referring to taking levo. It was quite a bizarre telephone conversation.

So this is where I'm at now.

My TSH level 4 months ago was almost at the upper range, I have just taken another test and it's almost at the lower range, still have symptoms and my thyroid antibody test is above range. Is my TSH low right now because my thyroid is being or has recently been attacked and there is more T4/T3 in blood from the thyroid damage so pituitary knows not to stimulate thyroid by producing more TSH? I can't tell how much T4 or T3 is present because my GP doesn't test me for this.

Also gluten, does this trigger an immune response that may be causing the fluctuations in my readings and symptoms? I am about to go gluten free after reading about the benefits so just curious to know anyone's opinion on this and on the possibility of thyroid being mistaken for gluten by immune system in triggered response? I saw something on leaky gut and found it really interesting.

Lastly I know it is a long post so thanks for reading and any help is always welcome.

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Somehow its vital you extract the actual test results from your doctors ...your legally entitled to them and without exact figures over the course of time complete with ref ranges we cant have a clue ..you need to start a file urgently

Auto Immune thyroid is Hashimotos

Not reacting well to levothyroxine tends to be because

Ferritin

Folate

B12

Vit d3

Are below the vital halfway in their ranges

You need

TSH

freet4

Freet3

Thyroid antibodies plus above 4 results for us to make sense of whats happening

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Thank you for the reply, I have posted all results of lab tests but looks like I need to request a few more and also looks like I'm in the lower ranges of B12 folate and ferritin.

I went gluten free yesterday too and started a file with all results in for future use.

I will request a FT3 and FT4 when I can doctor tomorrow, if refused I will use one of the labs recommended here.

Thanks for the advice so far :)

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Hello SJR38 and welcome. I was a little bit confused by your post as I wasn't sure what the reference to mini pill and shaving was about. Do you mean that you are growing facial hair and so you are on the mini pill or have I completely misunderstood? The reason I ask is that PCOS springs to mind but I might be completely mistaken about your wording.

The doctors don't usually call autoimmune thyroiditis, Hashimotos, but if you have raised antibodies and are hypothyroid then that's what it is. It's been named after the person who first described it, who was a Japanese doctor, hence the Japanese name for the disease which is recognised worldwide. Doctors in the UK generally don't seem to be very informed about thyroid disease and I'm not surprised the doctor sounded confused. However, that's not very helpful for you.

It is good to find out as much as you can about your own thyroid condition but you need to be scientific about it and begin by getting a copy of your blood test results. Make sure you get your results along with the laboratory ranges. You can ask you GP receptionist for a copy of blood test results along with lab ranges or if in the UK, you can register to get your results online. When you've got your results Post them here so people can help you make sense of them. If your doctor does not do FT4 and FT3 then at least insist on FT4 along with TSH but you can get them done through an online lab such as Medichecks or Blue Horizon if in the UK. Thyroid UK has some information about reliable labs on their website.

If you have high antibodies then your blood test results might vary due to the activity of antibodies. Many people on this forum have found going gluten free to be essential. SlowDragon has some good information about gluten free.

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Thank you for responding so quickly I do have results of all tests done apart from T3 and T4. Some have ranges and some don't. I will post them all tomorrow.

Sorry if I've been unclear, I'm not the greatest explainer. I'm not on the mini pill due to facial hair. I have really dry bad skin on several areas of my body only really been bad since I got the thyroid problem one of those areas I always used to shave, it's an intimate area. When I was discussing with the nurse an alternative contraception to the progesterone implant I had taken out a few months before, I mentioned the skin problems to her. She put me on mini pill, told me to stop shaving and use moisturiser as progesterone causes skin issues and levels in mini pill were lower than implant so might be a better option and improve the skin issues. Stopped mini pill now as I don't need to use a contraceptive anymore and not having a proper cycle for years can't be good for your body. Hope that clears up any confusion :)

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Ok, will try to view the results. Also post the amount of levo you take and if you have symptoms, what they are now.

You will need lab ranges for those you haven't got for people to be able to interpret them as labs vary.

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Thank you for response, all lab results added plus symptoms. I have started a file and will continue to ask for results when tested.

I'm not sure if there are supposed to be ranges for all of the lab results I have but I can always ask for any missing ranges if needed.

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The progersterone implant will have completely mucked up your whole body but they dont bother to tell you that

Take milk thistle tincture 10 drops in a little juice last thing at night from herein along with always taking at least 2000mg vit C in divided doses every day....this will clear the liver and help the adrenals (baldwins herbalist in london are excellent for milk thistle tincture use drop down box to order bigger sizes )

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How much levothyroxine are you taking each day?

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100mg on a morning,

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Welcome to the forum. Have a look st the Thyroid Uk site who run this forum. Lots of useful info but anything you don't understand shout out and I'm sure you will get plenty of help. Get into the habit of getting a copy of your results and the ranges. Ranges are important as they differ from lab to lab. Without them we would just be guessing. So useful to ask for help with them in the early times.

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I've started asking for lab results now, getting some resistance but I persevere :)

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Bloods taken give following:

TSH - 0.80 [0.38 - 5.33]

Thyroid peroxidase antibody 390 in/mL [<50.0] above range

C reactive protein 1.0 mg/L [0-10]

Enthrocyte Sed Rate 2 mm in 1Hr [1-12]

Ferritin 67 ug/L [11-307]

Folate 4.1 ug/L [3.1-19.9]

VitB12 237 ng/L [180-914]

25 OH Vitamin D (total) 55.0 nmol/L

Urea and electrolytes

Serum urea level (XM0lt) 3.0 mmol/L [2.8-7.2]

Serum creatine level (XE2q5) 52umol/L [45.0-84.0]

Serum sodium level (XE2q0) 138mmol/L [133.0-146.0]

Serum potassium level (XE2pz) 4.4mmol/L [3.5-5.3]

GFR calculated abbreviated MDRD (XaK8y) >90ml/min/1.73m^2

Full blood count

White blood count 7.2 10*9/L [4.0-10.0]

Haemoglobin concentration 150g/L [120.0-160.0]

Platelet count -observation 205 10*9/L [150.0-450.0]

Mean cell volume 94.4fL [77.0-101.0]

Red blood cell count 4.78 10*12/L [3.8-5.2]

Heamatocrit 0.449 [0.36-0.47]

Mean cell heamaglobin level 31.3pg [27.0-32.0]

Red blood cell distribution width 13.1% [10.9-15.1]

Neutrophil count 2.7 10*9/L [2.0-7.0]

Lymphocyte count 3.2 10*9/L [1.0-3.0] above range

Monocyte count 0.8 10*9/L [0.2-1.0]

Eosinophil count 0.4 10*9/L [0.0-0.5]

Basophil count 0.1 10*9/L [0.0-0.1]

Plasma glucose level 4.7 mmol/L

No actual values or ranges given on following but all state negative:

Endomysial antibody IgA level (Xalch)

Anti-nuclear factor level (XaC2s)

Microsomal autoantibodies (Xa1d3)

Antimotrochondrial autoantibody level (XE2pg)

Parietal cell aitoantibody level (XE2pi)

Anti-smooth muscle autoantibody level (XE2ph)

Liver function tests

Serum total bilirubin level 8umol/L [0.0-21.0]

Serum alanine aminotransferrase level 12u/L [0.0-40.0]

Serum alkaline phosphatase level 84u/L [30.0-120.0]

Serum gamma-glutamyl transferase level 20u/L [1.0-55.0]

Serum albumin level 43g/L [35.0-50.0]

Test 4 months ago for TSH 3.36mu/L [0.38-5.33]

That's all tests done to date, thanks for taking the time to look :)

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Symptoms I suffer from are:

Dizzy spells

Coldness

Very dry, itchy, flaky skin, dry hair, brittle nails

Constipation

dry eyes

General tiredness

Night sweats

Pins and needles and numbness/weird muscle ticks in thigh muscles

Foot cramps

Various mental health conditions anxiety/depression best way to describe is adult ADHD

I sometime get headaches, bloating, disturbed sleep and weight gain but not all the time and I'm not feeling these symptoms at present.

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TSH - 0.80 [0.38 - 5.33] I presume this is your most recent result?

Test 4 months ago for TSH 3.36mu/L [0.38-5.33] and this is your previous result?

Did you change the amount of levothyroxine you took or were you on 100 mcg levo when both of these were taken?

Ferritin 67 ug/L [11-307] Ferritin is not too bad but it could do with being at least 70 and better still mid-range so there is a little room for improvement.

Folate 4.1 ug/L [3.1-19.9] Folate is low but your doctor won't offer supplements because it's in range. YOu could get a good B complex with a methylfolate included which would bring it up and keep the B's balanced.

VitB12 237 ng/L [180-914] B12 is low, it needs to be at the top of the range. You could add some methylcobalamin in addition to your B complex to raise your level. You don't need to be too concerned about going over range as your body will get rid of what it cannot store and your kidney function looks great as it' over 90!

25 OH Vitamin D (total) 55.0 nmol/L Is there a range for this? If your result is 55 then in the UK this is sometimes considered sufficient but you need to find the lab range for it. Usually about 100 is nearer to an optimal level but you need to check. Mid-range is best. You need to be careful not to overdo vitamin D as your body stores it and it's not water soluble so can build up to toxic levels which is why you should test regularly and be sure of the ranges.

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Yes you are right, the lower TSH is my current level, taken about a week ago. I have been consistently taking 100mg Levothyroxine with no changes at all between the 2 readings. I've been on 100mg of Levo for around 2 years with no alterations.

The Vitimin D test came on a separate printout with no ranges on. It specified adequate vitimin D status. I will try and get the ranges for this.

The ferritin result did also have a note underneath it saying:

Note that ferritin is an acute phase reactant and a normal ferritin does not exclude iron deficiency in the presence of infective or inflammatory disease, or hepatocellular damage. Serum iron and TIBC are also affected by illness, both acute and chronic and their measurement is unlikely to be helpful.

Not sure if that's useful but might as well add that :)

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