NEWBIE: Hi to all, I am new to this forum, been... - Thyroid UK

Thyroid UK

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phobicgirl
phobicgirl

Hi to all,

I am new to this forum, been on levothyroxine for about 18 years, take all my meds together in the morning which I now know is a no no, never had any advice except take on empty stomach and no food for one hour. Was diagnosed 7 years ago with M.E. Wondering if it really was M.E. At present was treated for 6 months with chronic sinusitis and constant antibiotics and codeine with paracetamol, had terrible migraines, went to private E.N.T, no chronic sinusitis but maybe migraines but see a neurologist, told GP outcome and he said he treat me with imigran and propranolol. This made things really worse and I was so ill I went to private neurologist. He said no more drugs, I would have to suffer the withdrawals and need a brain neck and lumber scan, no hope of even getting one on the NHS any time soon. My open upright scan is booked for 17th march. I am hoping to be well enough to travel on this day. I am now housebound and in constant pain, I need some good sound advice which is normally from those that have the same condition. I don't know my thyroid levels and would not even know what they meant .... HELP

Thanks and sorry its long winded

16 Replies
oldestnewest

It doesn't matter that you don't know what your blood test results mean, we know. And we can explain them to you. So, what you need to do is get hold of them, because it's very difficult to give anyone any advice without seeing them. :)

Obviously, taking other medications/supplements with your levo was wrong, so how long have you been taking your levo correctly, now? When did you have your last test? Are you taking anything apart from levo?

I think your suspicion that you never really had ME is probably correct. It sounds as if you're just under-medicated. But, we need to see your labs to know. :)

phobicgirl
phobicgirl in reply to greygoose

thank you for your reply.

There was a lot of tests and I have copied pasted some that might be relevant

Serum free T4 level (XaERr) 11.7 pmol/L [7.9 - 16]

Coded entry Urea and electrolytes (X77Wi)

Coded entry Thyroid function test (X77Wg)

Coded entry Serum TSH level (XaELV) 0.56 miu/L [0.3 - 5]

Coded entry Serum urea level (XM0lt) 4.9 mmol/L [2.5 - 7.8]

Coded entry Serum creatinine level (XE2q5) 68 umol/L [45 - 83]

Coded entry Serum sodium level (XE2q0) 137 mmol/L [133 - 146]

Coded entry Serum potassium level (XE2pz) 4.8 mmol/L [3.5 - 5.3]

Coded entry Serum alanine aminotransferase level (XaLJx) 6 iu/L [0 - 35]

20th February 2019 was this thyroid test.

medication was Levothyroxine, antibiotics, imigran, propranolol, codeine, paracetamol, H.R.T, zolpidem. Multivitamin, cod liver oil cap, Diazepam for the blood test to relax me!

Today is my 6th day of withdrawal from all drugs except

Levothyroxine, H.R.T, Zolpidem. : )

phobicgirl
phobicgirl in reply to greygoose

I was taken to hospital yesterday by ambulance, they did blood test and said all my levels were normal, the private neurologist mailed me on Thursday and said my test 2 weeks ago chronic kidney disturbance but no problem! Hospital Dr insisted that the GP should refer me to the hospital specialist so they can put a plan in place for treatment if needed, he also said I should continue on codeine for the migraines until I could be scanned. He made a lot of sense, it’s difficult because private are in it for the high fee!! Where should I go from here ? Hope I’m posting correctly as not quite able to think straight yet. Thanks in advance for any help

greygoose
greygoose in reply to phobicgirl

What sort of specialist?

I don't know that private specialists are in it for the fee, but possibly. The problem is, they're rarely any better than those you see on the NHS. I think the only advantage is that you don't have to wait so long to see them.

In your results above, you only have TSH and FT4 for thyroid. So, perhaps your first step should be to get full thyroid testing privately - you don't have to go through a doctor:

thyroiduk.org/tuk/testing/p...

As well as the TSH and FT4, you also want:

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

There was no point in taking a multi-vit for many reasons, you wouldn't get much out of it. You should only take what you need and as much as you need, so if you do those tests, you can make a supplement plan according to the results - or someone here can do it for you.

Your TSH was ok, above, but your FT4 was rather low for someone on thyroid hormone replacement. So, it's pretty clear that you really need an increase in levo. :)

phobicgirl
phobicgirl in reply to greygoose

Thank you so much and it is sinking in that all my problems may well me the fact I have never thought all these recent migraine attacks and breathlessness might well be thyroid related. I have seen private E.N.T to prove to my doctor I do not have sinus problem, I have now seen a neurologist who said my kidney result was chronic disturbance but not a problem, hospital said kidneys ok, thyroid levels ok and all blood works for what you mention all good. Having been on here with some advice I think I know what direction to steer my doctor and myself in now.

Test result Serum vitamin B12 level;Full blood count;Serum ferritin level;Serum folate level;Liver function tests;Thyroid function test;Urea and electrolytes;GFR calculated abbreviated MDRD Report, Abnormal, Need to speak to doctor

Coded entry Serum free T4 level (XaERr) 11.7 pmol/L [7.9 - 16]

Coded entry Urea and electrolytes (X77Wi)

Coded entry Thyroid function test (X77Wg)

Coded entry Serum TSH level (XaELV) 0.56 miu/L [0.3 - 5]

Coded entry Serum urea level (XM0lt) 4.9 mmol/L [2.5 - 7.8]

Coded entry Serum creatinine level (XE2q5) 68 umol/L [45 - 83]

Coded entry Serum sodium level (XE2q0) 137 mmol/L [133 - 146]

Coded entry Serum potassium level (XE2pz) 4.8 mmol/L [3.5 - 5.3]

Coded entry Serum alanine aminotransferase level (XaLJx) 6 iu/L [0 - 35]

Coded entry Liver function tests (X77WP)

Coded entry Serum total protein level (XE2e9) 68 g/L [60 - 80]

Coded entry Serum ferritin level (XE24r) 10 ng/ml [15 - 300]

Coded entry Serum folate level (42U5.) 5 ng/ml [2.5 - 9,999]

Coded entry Serum alkaline phosphatase level (XE2px) 73 iu/L [30 - 130]

Coded entry Serum total bilirubin level (XaERu) 8 umol/L [0 - 21]

Coded entry Serum albumin level (XE2eA) 38 g/L [35 - 50]

Coded entry Serum globulin level (XE2eB) 30 g/L [20 - 35]

Coded entry GFR calculated abbreviated MDRD (XaK8y)

Coded entry Mean platelet volume (42Z5.) 8.2 fL

Coded entry Neutrophil count (42J..) 5.53 10^9/L [1.7 - 7.5]

Coded entry Mean cell volume (42A..) 90.2 fL [80 - 100]

Coded entry Mean cell haemoglobin level (XE2pb) 29.7 pg [27 - 32]

Coded entry Eosinophil count - observation (42K..) 0.04 10^9/L [0 - 0.4]

Coded entry Basophil count (42L..) 0.03 10^9/L [0 - 0.1]

Coded entry Lymphocyte count (42M..) 2.6 10^9/L [1 - 4.5]

Coded entry Monocyte count - observation (42N..) 0.4 10^9/L [0.2 - 0.8]

Coded entry Full blood count (424..)

Coded entry Haemoglobin concentration (Xa96v) 11.7 g/dL [11.5 - 16.5]

Coded entry GFR calculated abbreviated MDRD (XaK8y) > 60 mL/min/1.73m*2 [60 - 250]

Coded entry Serum vitamin B12 level (XE2pf) 316 ng/L [120 - 900]

Coded entry Haematocrit (X76tb) 0.36 [0.37 - 0.46]

Coded entry Red blood cell count (426..) 3.94 10^12/L [3.8 - 5.8]

Coded entry Total white blood count (XaIdY) 8.6 10^9/L [4 - 11]

Coded entry Platelet count - observation (42P..) 419 10^9/L [150 - 400]

sorry this is rather entailed :(

greygoose
greygoose in reply to phobicgirl

Yes, it is. And I don't know anything about most of those tests. But, I wouldn't call your FT4 'ok'. It's too low. And if the FT4 is low, then the FT3 is probably going to be even lower, and that's what is causing your problems. Have you had your nutrients tested? When? Low ferritin and low B12 will cause breathlessness. Plus your body cannot use thyroid hormone correctly unless all your nutrients are optimal.

If you've had those tests done, and your doctor said they're ok, don't believe him. Post the results on here, and let's have a look. GPs know as little about nutrients as they do hormones.

phobicgirl
phobicgirl in reply to greygoose

Thank you so much I have copied pasted a small part of your reply to help me at the doctors tomorrow, levels baffle me but when I got diagnosed 7 years ago with M.E, I studies thyroid and felt all along this may be my problem not M.E. Can I ask your opinion on armour thyroid as I did a lot of research on this and wondered if this might be better for someone with low immune system, so Dr say's I have!

I really appreciate all the advice as I cant tell you how ill and desperate I have been, guessing many here have felt like this to, today is a better day but I take nothing for granted. :) thanks

greygoose
greygoose in reply to phobicgirl

Yes, I think most of us have been there - thank god for internet!

A low immune system… What does that even mean? Sound like the sort of thing doctors say to make it look like they know what they're talking about - sounds vaguely technical but nobody knows what they mean. But, I don't think that, if such is your problem, that the type of thyroid hormone replacement you take is important, as long as it suits you. You need to find what you need as an individual. Armour is very good for a lot of people, but not everyone. We have to experiment.

Because of the rediculously high ranges for TSH, and reliance on TSH only, a lot of people are diagnosed with ME/CFS or fibro, when what is really wrong with them is low thyroid hormones - too low for them. It happens all the time. Thank goodness you've finally found the real problem. :)

phobicgirl
phobicgirl in reply to greygoose

Haha well the first part of your reply did make me smile as low immune system is just two words but should be backed up with why, yes I have a diagnosis for fibromyalgia to but seems everything i have is because I have M.E. Something I will not prescribe to. I don’t meet the criteria of M.E in my opinion only the Dr’s because they have no other solution .

I think I am understanding more about the levels now and hope I continue to learn from the good people here, unfortunately I am only able to take advice and not give any help to others, so I really do appreciate you taking time out to help me :)

SeasideSusie
SeasideSusieAdministrator

phobicgirl

First thing to do is pop along to your GP surgery and ask at the reception desk for a print out of your test results. We are legally entitled to them here in the UK. You don't need to give a reason for wanting them. Make sure it's a print out, not hand written or verbal results as mistakes can sometimes be made.

It doesn't matter that you don't know what they mean, many members here can interpret them for you so when you have the results, post them on the forum and include the reference ranges as they vary from lab to lab, ranges are often in brackets or at the side of the result, eg TSH: 2.5 (0.2-4.2)

What you really need, for a full picture, to start with are

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

You GP wont be able to get them all done but you can see what has already been done.

If you want to, you could take advantage of today's special offer from one of our recommended labs - Medichecks - who are offering a generous discount on the test that includes everything in that list. They have a special offer on one test every Thursday, today it happens to be the Thyroid Check Ultravit

medichecks.com/thyroid-func...

You can do this by fingerprick or venous blood draw (extra cost for that).

Hopefully, as a first step, this will give us some clues and we may be able to suggest a way forward.

Thank you for your reply I have posted some of my results here but of course they mean nothing to me and I have been unable to go to the doctors for a report as I am to unwell.

Looked through my results and don't see which is relevant so have copied them here.. Not sure how forum works yet as I'm a newbie :) As I copied this to you I see abnormal need to speak to Doctor!

Test result Serum vitamin B12 level;Full blood count;Serum ferritin level;Serum folate level;Liver function tests;Thyroid function test;Urea and electrolytes;GFR calculated abbreviated MDRD Report, Abnormal, Need to speak to doctor

Coded entry Serum free T4 level (XaERr) 11.7 pmol/L [7.9 - 16]

Coded entry Urea and electrolytes (X77Wi)

Coded entry Thyroid function test (X77Wg)

Coded entry Serum TSH level (XaELV) 0.56 miu/L [0.3 - 5]

Coded entry Serum urea level (XM0lt) 4.9 mmol/L [2.5 - 7.8]

Coded entry Serum creatinine level (XE2q5) 68 umol/L [45 - 83]

Coded entry Serum sodium level (XE2q0) 137 mmol/L [133 - 146]

Coded entry Serum potassium level (XE2pz) 4.8 mmol/L [3.5 - 5.3]

Coded entry Serum alanine aminotransferase level (XaLJx) 6 iu/L [0 - 35]

Coded entry Liver function tests (X77WP)

Coded entry Serum total protein level (XE2e9) 68 g/L [60 - 80]

Coded entry Serum ferritin level (XE24r) 10 ng/ml [15 - 300]

Coded entry Serum folate level (42U5.) 5 ng/ml [2.5 - 9,999]

Coded entry Serum alkaline phosphatase level (XE2px) 73 iu/L [30 - 130]

Coded entry Serum total bilirubin level (XaERu) 8 umol/L [0 - 21]

Coded entry Serum albumin level (XE2eA) 38 g/L [35 - 50]

Coded entry Serum globulin level (XE2eB) 30 g/L [20 - 35]

Coded entry GFR calculated abbreviated MDRD (XaK8y)

Coded entry Mean platelet volume (42Z5.) 8.2 fL

Coded entry Neutrophil count (42J..) 5.53 10^9/L [1.7 - 7.5]

Coded entry Mean cell volume (42A..) 90.2 fL [80 - 100]

Coded entry Mean cell haemoglobin level (XE2pb) 29.7 pg [27 - 32]

Coded entry Eosinophil count - observation (42K..) 0.04 10^9/L [0 - 0.4]

Coded entry Basophil count (42L..) 0.03 10^9/L [0 - 0.1]

Coded entry Lymphocyte count (42M..) 2.6 10^9/L [1 - 4.5]

Coded entry Monocyte count - observation (42N..) 0.4 10^9/L [0.2 - 0.8]

Coded entry Full blood count (424..)

Coded entry Haemoglobin concentration (Xa96v) 11.7 g/dL [11.5 - 16.5]

Coded entry GFR calculated abbreviated MDRD (XaK8y) > 60 mL/min/1.73m*2 [60 - 250]

Coded entry Serum vitamin B12 level (XE2pf) 316 ng/L [120 - 900]

Coded entry Haematocrit (X76tb) 0.36 [0.37 - 0.46]

Coded entry Red blood cell count (426..) 3.94 10^12/L [3.8 - 5.8]

Coded entry Total white blood count (XaIdY) 8.6 10^9/L [4 - 11]

Coded entry Platelet count - observation (42P..) 419 10^9/L [150 - 400]

sorry this is rather entailed :(

SeasideSusie
SeasideSusieAdministrator in reply to phobicgirl

phobicgirl

I wont comment on those that are in range as they all look OK, but I am not experienced in some of them.

As for thyroid results:

TSH: 0.56 miu/L [0.3 - 5]

FT4: 11.7 pmol/L [7.9 - 16] - 47% through range

Your FT4 is low in range, lower than one would expect to see with your TSH level. This suggests undermedication.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3. You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

It's also important to test FT3 because T3 is the active hormone that every cell in our bodies need, so testing FT3 at the same time as FT4 and TSH tells us whether we are converting T4 to T3 well enough.

If GP can't get FT3 tested, and it's usually the lab's decision even when a GP requests it, we have recommended private labs which can do the full testing either by fingerprick or venous blood draw at extra cost.

Either of these tests cover TSH, FT4, FT3 and thyroid antibodies:

Medichecks Thyroid Check Plus medichecks.com/thyroid-func... and code THYROIDUK gives 10% discount on any test not on special offer

Blue Horizon Thyroid Plus Six bluehorizonmedicals.co.uk/t...

ferritin: 10 ng/ml [15 - 300]

This is a major problem, you are below range. An iron infusion would be a good idea as this will bring your level up within 24-48 hours whereas tablets will take many months.

B12: 316 ng/L [120 - 900] (ng/L is the same as pg/ml)

This is on the low side. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

Do you have any signs of B12 deficiency? Check here b12deficiency.info/signs-an...

If so then list them to discuss with your GP an ask for further testing for B12 deficiency/pernicious anaemia.

folate: 5 ng/ml [2.5 - 9,999]

Although in range, this is very low. It's not low enough for your GP to prescribe folic acid so a good B Complex containing 400mcg methylfolate would help, e.g. Thorne Basic B or Igennus Super B. Do not start supplementing until further testing of B12 has been carried out and B12 injections or supplements started as it will mask signs of B12 deficiency and skew results.

Vit D should be tested. If GP wont do it (and some say it's an expensive test) then you can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Haematocrit: 0.36 [0.37 - 0.46]

This is below range, which can be connected with low vitamins and minerals, but your red cell count is low in range, your haemoglobin is low in range so maybe ask your GP about anaemia. I am not an expert in this, so I don't know, it's just a suggestion because your ferritin is so dire.

Platelet count: 419 10^9/L [150 - 400]

Infection and inflammatory conditions can cause raised platelet count, but so can iron deficiency anaemia, so again discuss with GP.

Thank you so much for this information and it actually does tell me what I suspected for some time about my low levels. I can now converse with the doctor a lot better when armed with information. I am also having a brain spine and lumber scan privately on the 17th march. My private neurologist advised this and my private E.N.T asked for the blood works as he felt these levels might be low and that's why I am having " Migraines" The N.H.S have a 6 months wait list and I am to ill to wait, the cost is a lot but your health is all you have. Again thanks, this really will help me to move forward.

Phobicgirl :)

I was taken to hospital yesterday by ambulance, they did blood test and said all my levels were normal, the private neurologist mailed me on Thursday and said my test 2 weeks ago chronic kidney disturbance but no problem! Hospital Dr insisted that the GP should refer me to the hospital specialist so they can put a plan in place for treatment if needed, he also said I should continue on codeine for the migraines until I could be scanned. He made a lot of sense, it’s difficult because private are in it for the high fee!! Where should I go from here ?

SlowDragon
SlowDragonAdministrator

Propranolol affects thyroid hormones. It's often used to treat hyperthyroid patients. How much were you on? Propranolol should be withdrawn very, very slowly. Not a sudden withdrawal.

Propranolol also may lower magnesium. Low magnesium is common hypothyroid problem

You need vitamin D tested. Likely to be low too. Low magnesium and low vitamin D are common

Ask GP to test vitamin D or postal kit test £29

vitamindtest.org.uk

Link about propranolol withdrawal

ncbi.nlm.nih.gov/pubmed/627...

Personally I was stuck on propranolol for almost 20 years and also hypothyroid/Hashimoto's

Maximum reduction I could tolerate was 5mcg per day. Hold at that dose for 2 weeks. Reduce another 5mcg then hold at that dose for two weeks etc. Last 5mcg was most difficult. Stopped one day a week, then next week, stopped twice a week etc

Thank you for the reply, it has been the best thing I have been able to do today, join this site. I only took the propranolol for 11 days when I became severely ill and I did stop it immediately along with the imigran, these were both prescribed for migraines by my doctor who just guessed migraines, neurologist said the pills were causing the migraines and also possible vitamin deficiency. I have been ill since August and a conversation just yesterday with a friend in Canada about levothyroxine, no other drugs to be taken with it, well I took all meds all at once in morning, this led me to do more research and then I knew I needed help from a group forum on thyroid! people with the problem always have great advice because they know. I have been on this drug 19 years and only since having cancer with the removal of a G.I.S.T did more problems arise. 8 years ago I was diagnosed with M.E and I always said I never had M.E I still believe I didn't and don't, looking to the thyroid it mimics the same symptoms. I thank you and all here for your patience for reading my rants and deciphering them, I have brain fog! also for just helping me to go to the next level of wellness

phobicgirl :)

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