Frustrated and Tired of Being Tired: Hi Four... - Thyroid UK

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Frustrated and Tired of Being Tired

GeminiJoJo profile image
14 Replies

Hi

Four years ago I had Weight Loss Surgery for which everything was great for the first two years. Two years ago I was struck down with extreme tiredness and had no energy whatsoever. I went from running 5-6 times a week to not having the energy to run more than a couple of times, at a push. My symptoms continued to get worse and my muscles continuously ached. In may they finally revealed I had low iron and increased my iron tablet which made a little difference buy not much. I am told that iron levels are fine now and so I am stumped as to why of late I am suffering with extreme shortness of breath, I feel like I have had a sore throat or there is something in my throat for the past 5-6 weeks, my voice is husky, my skin itchy, although still tired I am waking up several times during the night and that is just the main symptoms. Both my mum and my sister have under active thyroid and have been telling me for some time they experienced similar symptoms before being diagnosed but the doctor has tested me three times this year for under active thyroid and tells me that I am within normal range. I am completely baffled by this. I sure as hell do not want to be ill but feel I am continuously returning to the doctor like a stuck record as I want to return back to how I was after my surgery when I had so much energy and life and was running marathons. I tried to include a copy of my latest blood test results but for some reason it was not allowing me to upload as a photo. I wonder if anyone is able to offer any advice as I am looking to seek a second opinion in order to try and get some resolution to all of this. No explanation of the results were given except for, "you don't have an underactive thyroid".

I am sorry if the above is a bit long winded but feel like I am banging my head against a wall and just want answers.

Thank you.

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14 Replies
shaws profile image
shawsAdministrator

Welcome to our forum,

I am not surprised you are frustrated by not getting a diagnosis, particularly as it is within the family.

I don't know how you upload blood tests. Someone will respond, if not just type them as it is helpful for comments.

If I was a betting woman, your earlier weight gain might have been due to a failing thyroid gland as that is one of the clinical symptoms (of which there are many) unexplained weight gain. Your clinical symptoms now sound hypo related.

Before blood tests were introduced we were diagnosed upon our clinical symptoms alone and given natural dessicated thyroid hormones. Nowadays, it is all based upon the blood test and clinical symptoms ignored.

If your GP has only done a TSH blood test - that's not sufficient. He should do a full thyroid blood test, i.e. TSH, T4, T3, Free T4, Free T3, plus vitamin B12, Vit D, iron, ferritin and folate as, if deficient, minerals/vitamins should be optimal.

If your GP won't do all of the thyroid hormones, you can get a private one done and I'll give a link.

It is very frustrating when you feel something is wrong and told the blood tests are 'normal'. Many thousands of people get the same diagnosis and have extremely difficult times especially for everyday normal activities.

You can tell him you've been in contact with the NHS choices for advice of thyroid gland dysfunctions who have advised these tests. He might be told only TSH is sufficient but it isn't.

When you go for a blood test, it should be the earliest possible and fast (you can drink water). If, when, diagnosed and you take levo you have to leave about 24 hours between dose and blood test and take it afterwards.

thyroiduk.org.uk/tuk/thyroi...

thyroiduk.org.uk/tuk/testin...

GeminiJoJo profile image
GeminiJoJo in reply to shaws

Thank you for your quick reply. Below are the test results. I know I did not fast for these tests. In fact, I actually remember asking and was told no so I went that day straight after the doctor's appointment which was about Mid-Day. I am not sure if the thyroid tests you suggest were carried out but I would definitely look to have these done, via NHS or private so would appreciate the link being sent through too as if I have no joy with my doctor then I will look to go private.

Blood haematinic levels –(rkg) – Normal

Serum Vitamin B12272 ng/L

Serum Folate 8.1 ug/L

Replete 5.4 – 20.0 ug/L

Indeterminate 3.4-5.3 ug/L

Deficient <3.4 ug/L

Thyroid Function Test – (rkg) - Normal

Serum TSH Level3.22 mu/L

Differential White Cell Count

Neutrophil Count2.1 10*9/L

Lymphocyte Count1.9 10*9/L

Monocyte Count0.4 10*9/L

Eosinophil Count0.2 10*9/L

Basophil Count0.0 10*9/L

Promyelocyte Count0.01 10*9/L

Full Blood Count - FBC

Haemoglobin estimation139 g/L

Total White Cell Count5.2 10*9/L

Red Blood Cell (RBC) Count4.28 10*12/L

Haematocrit0.41

Mean Corpuscular Volume (MCV)95.8 fL

Red Blood Cell Distribut width12.6 %

! Mean Corpusc. Haemoglobin (MCH)32.5 pg

Mean Corpusc. Hb. Conc. (MCHC)339 g/L

Platelet Count231 10*9/L

Mean Platelet Volume11.60 fL

I have no idea what all of this means but sure would like to get to the bottom of this as soon as possible so any advice and assistance is much appreciated.

Thank you.

shaws profile image
shawsAdministrator in reply to GeminiJoJo

I will leave other members to comment on your blood test results and the TSH alone which is within the normal range and is the reason the doctor says 'normal' but they usually ignore our clinical symptoms. This is from Thyroiduk.org.uk which is self-explanatory.

thyroiduk.org.uk/tuk/testin...

On the left-hand column of the above link there is also 'signs/symptoms' which you can tick off the ones that apply to you and also 'Getting a Diagnosis'.

B12 is 272 which is low and an intrinsic test would suggest whether or not you have Pernicious Anaemia. We recommend a B12 to be around 1,000 and you can supplement with methylcobalamin B12 (not cyanocobalamin) sublingual, which then bypasses our stomach which might be compromised with hypo.

If you buy anything from Amazon (supplements too) this is a link which is self-explanatory. I buy my sublingual through it too.

healthunlocked.com/thyroidu...

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

Justiina profile image
Justiina

What type of surgery you had? You are taking all vitamins necessary? Getting B12 as pills or injections?

You B12 is low enough to cause symptoms as THS high enough to tell you might be hypo. Folate could be slightly better too.

Other values looks ok so it does not look like megaloblastic nor pernicious anemia.

GeminiJoJo profile image
GeminiJoJo in reply to Justiina

Hi Justina

I had the gastric bypass four years ago. I take my multi-vitamin without fail and also my iron tablet which clearly wasn't enough and hence the very low reading in May. They then increased this to three (200mg) a day and after the last results said that I can go back to one a day. I do not take anything for B12, apart from anything that may be in the multi-vitamin. So should I return to GP and tell him that I need B12 injections/tablets? I know with bypass surgery it is common to be B12 deficient so surely they should have seen this and checked for this in the first instance?

Thank you so much for your response.

Justiina profile image
Justiina in reply to GeminiJoJo

They might not do nothing about your B12 as you are still in range but it might be different for patients like you that have had that surgery.

I would ask about it as many of your symptoms are related to B12 deficiency. If they refuse then buy sublingual B12. In your case it might be necessary to supplement the rest of your life :)

Most probably you need both issues fixed before feeling better. Supplementing B12 might fix some of your symptoms pretty fast! I felt the benefit in couple days.

Clutter profile image
Clutter

Geminijojo, TSH >2.0 indicates your thyroid is beginning to struggle but NHS doesn't diagnose and treat hypothyroidism until TSH is over range. Supplementing 200mcg selenium is good thyroid support and a thyroid supplement like Nutri-Thyroid may be helpful too.

B12 272 is very low, 1,000 is optimal. Supplement 5,000mcg methylcobalamin for 8-12 weeks then reduce to 1,000mcg maintenance dose. Take a B Complex vitamin to keep the other B vitamins balanced.

It's not possible to interpret blood tests without the ranges (figures in brackets after results) but labtestsonline.org/understa... will explain what the tests are for and what high or low evaluations mean.

___________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

GeminiJoJo profile image
GeminiJoJo in reply to Clutter

Thank you Clutter. Can I buy these supplements from any good health store or are you saying that I have to return to my GP with these suggestions for him to prescribe? Sorry if it comes across as a silly question but I am new on here so want to make sure I get it right.

Clutter profile image
Clutter in reply to GeminiJoJo

Geminijojo, They're non-prescription supplements available over the counter and online. Selenium should be available in healthstores but I don't know whether Nutri-Thyroid is but it is available online via thyroiduk.org.uk/tuk/treatm... and Amazon via thyroiduk.org.uk/tuk/go_sho...

GeminiJoJo profile image
GeminiJoJo in reply to Clutter

Thank you so much Clutter, this is a huge help. I shall go online now and order and keep my fingers cross for some improvement.

greygoose profile image
greygoose

Geminijojo, multi-vits are for healthy people, not people with health issues. There's not enough of anything in them to deal with a real deficiency. So, just because you're taking a multi-vit, it doesn't mean you can't have deficiencies. Best to test from time to time and supplement individual vits and mins where necessary. :)

Such a shame your doctor only did the TSH, that doesn't tell the whole story. Do your mother and sister have Hashi's? It might be a good idea to ask for your antibodies to be tested, anyway - TPO as Hashi's tends to run in families.

It would also be good to have your FT4 and FT3 tested. Your doctor/lab might not agree to do them, but you could have them done privately. They could be very low, but your TSH still in range. And it's low FT3 that gives you symptoms. :(

GeminiJoJo profile image
GeminiJoJo in reply to greygoose

Thank you greygoose, that is very helpful, as is the other comments received. I am going to book an appointment with the doctor now to get these tests done, if possible. If not, I shall go private.

greygoose profile image
greygoose in reply to GeminiJoJo

That's good. But Don't forget to get a copy of the results with the ranges. :)

GeminiJoJo profile image
GeminiJoJo in reply to greygoose

I will do.

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