Fed up

[eddm]

I've been exhausted for years now, and it's really taking its toll. It affects everything I do. I have depression, which I'm assuming is a result of my hypothyroidism, pernicious anaemia and have suffered from very low vitamin D levels as I sleep the majority of the time so don't always see much sunlight. My joints and back hurt from lying down so much.

I've been receiving levothyroxine for half a year now, and haven't felt any benefits whatsoever. If anything, I'm putting on weight! (Maybe due to diet too)

I'm sick of this constant exhaustion and lack of answers by my GP. I can't function properly. I want to start exercising to try and feel more energetic but I can't even gently walk my dog without having to rest every 10-15 minutes.

My appetite is awful, as I'm constantly craving a quick energy release (contributing to weight gain), though when I'm home I'm lucky to receive a healthy home cooked meal. I can increasingly feel it taking its toll on my general wellbeing. I don't know what to do anymore, because I can't cope like this much longer.

There are 2 weeks until my next doctors appointment where I will request another blood test and answers, but I'm miserable so much as thinking about the next couple of weeks.

Please help. Any supplements you suggest... specific exercises... any advice please.

[greygoose]

Sounds as if you are under-medicated. How much are you taking? Do you ever get a print-out of your results? It's your legal right to have one. If you haven't already, ask your doctor when you next see him.

Don't take any supplements until you've had your vit D, vit B12, folate and ferritin tested, or you'll just muddy the waters. As for exercise : don't. Exercise uses up all your T3, and it doesn't sound as if you've got enough to start with. It won't energise you, it will just wipe you out. Walking the dog, as far as you can, is good enough for the moment - although you could try a little yoga.

Make sure you get enough to eat - don't go hungry - forget your weight for the time being, it probably has nothing to do with your diet, anyway. Your body need nourishing. Make sure you get plenty of fat, and avoid unfermented soy like the plague!

When you get your results from the next test, post them on here - with the ranges - and people will be able to help you better. Anything else will just be wild guesses.

[eddm in reply to greygoose]

Thank you for that. I found this forum because I haven’t felt this fed up in a long time, it’s so disabling.

I am only on 25mg - the blood test after that revealed that my T4 was 12.1pmol/L (normal range), and TSH was 1.72mu/L (again, normal range). These results are from July.

I have access to all of my test results online (but only since I moved to this GP practice. Before then, when my pernicious anaemia was diagnosed, my B12 was critically low and vitamin D levels were ‘vampire level’.

With 3-monthly injections my B12 is 426ng/L (as of July).

My white cell counts were all within the normal range (though the basophil count was borderline) - not that I know what this means. Eosinophil count was at the lower end. Lymphocyte count was relatively high, as was neutrophil count.

The total white cell count was 10 10*9/L - quite high but that’s good, right?

RBC count was slightly abnormal but the GP didn’t flag that. 4.96 10*12/L...

Borderline mean corpusc. haemiglobin (MHC) - 27.5pg and the mean corpuscular volume (MCV) was at the lower end of the spectrum (84.5fL).

Sorry if these figures mean absolutely nothing to you, which is how I feel, but thought I’d include details. The doctor didn’t check my vitamin D. I’ll ask for more tests because I don’t feel any better despite treating the depression, B12 and hypothyroid. I can feel it’s not right, and it took them long enough to even test my thyroid despite years of fatigue - “thats a symptom of depression”.... Umm..

Rant over I just keep getting hopeful when they give me a treatable diagnosis and I end up let down.

[greygoose in reply to eddm]

You don't give a range for the FT4, but it looks low. I imagine the doctor is just treating by the TSH, which is wrong. 25 mcg is less than a starter dose, you should probably be on around 100 mcg or more. I think you're going to have to put your foot down, and demand an increase. Your doctor is keeping you ill.

[eddm in reply to greygoose]

Serum free T4 level12.1 pmol/L - Range: 9 - 22.7pmol/L

Serum TSH level1.72 mu/L - Range: 0.35 - 5.5mu/L

Considering the doctor insisted that it was just the depression and I had to fight for a simple b12 test I don’t really trust them. It’s like they just want to treat the symptoms, not the underlying problem - but they can’t do either! :’(

I think you’re right. I’ll put my foot down, more tests and might try to demand a referral to an endocrinologist (maybe they’ll be able to help). And I’ll demand an increase.

They put my mum on the same dose and she’s feeling no better either (she was diagnosed around the same time I was). Bloody useless! I wish I could afford private healthcare.

[greygoose in reply to eddm]

Well, the sad truth is, private healthcare isn't always any better. It's just a total ignorance of thyroid. But, if we persist, we can sometimes get what we want.

[Clutter]

Welcome to the forum, Eddm.

Ask your GP receptionist for a printout of your last thyroid test results and ranges and post them in a new question and we will be able to advise whether you are optimally medicated. If you have results for ferritin, vitamin D, B12 and folate post them too.

If vitD is low you need to supplement D3. How much to supplement depends on how low your vitD level is.

[eddm in reply to Clutter]

Thanks for replying. I’ll just copy what I said to greygoose. Do you have any suggestions as to what things I should ask to be tested?

Thank you for that. I found this forum because I haven’t felt this fed up in a long time, it’s so disabling.

I am only on 25mg - the blood test after that revealed that my T4 was 12.1pmol/L (normal range), and TSH was 1.72mu/L (again, normal range). These results are from July.

I have access to all of my test results online (but only since I moved to this GP practice. Before then, when my pernicious anaemia was diagnosed, my B12 was critically low and vitamin D levels were ‘vampire level’.

With 3-monthly injections my B12 is 426ng/L (as of July).

My white cell counts were all within the normal range (though the basophil count was borderline) - not that I know what this means. Eosinophil count was at the lower end. Lymphocyte count was relatively high, as was neutrophil count.

The total white cell count was 10 10*9/L - quite high but that’s good, right?

RBC count was slightly abnormal but the GP didn’t flag that. 4.96 10*12/L...

Borderline mean corpusc. haemiglobin (MHC) - 27.5pg and the mean corpuscular volume (MCV) was at the lower end of the spectrum (84.5fL).

Sorry if these figures mean absolutely nothing to you, which is how I feel, but thought I’d include details. The doctor didn’t check my vitamin D. I’ll ask for more tests because I don’t feel any better despite treating the depression, B12 and hypothyroid. I can feel it’s not right, and it took them long enough to even test my thyroid despite years of fatigue - “thats a symptom of depression”.... Umm..

Rant over I just keep getting hopeful when they give me a treatable diagnosis and I end up let down.

[Clutter in reply to eddm]

eddm,

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.35-1.0 (which is still within normal range) with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

If you don't feel any improvement after a Levothyroxine dose increase it is worth you ordering a private thyroid test to check your FT3 level if your GP is unable to check FT3.

Try to find what your vitD level is. 'Vampire level' sounds quite low. I experienced a deal of musculoskeletal pain when I was vitD deficient.

You will get better advice about B12 deficiency from healthunlocked.com/pasoc

This link will explain the low and high evaluations in your white and red blood cell counts labtestsonline.org/understa...

[SmallBlueThing in reply to eddm]

Do you have any suggestions as to what things I should ask to be tested?

Autoimmune hepatitis?

[eddm]

Thank you. I’ll have a read of this now!

[crimple]

Your B12 is way too low. Most thyroidis suffer from low B12 and low Vit D. My dad has pernicious anaemia and used to have B12 jabs every month. The powers that be (the bean counters/ accountants) at NHS decided that to save money he should only have a jab every 3 months, result he is exhausted and his level is 370 which will probably lead to peripheral neuropathy= nerve damage. A level around 1000 is recommended by pernicious anaemia society. You can get Vit d test from city assays for £28 and for thyroidies a level of 100 is best. Low B12 and Vit D often =depression and the best cure is improved vit levels. Avoid anti depressants like the plague. I am not medically qualified but speak from personal experience as I have hypo and antibodies and have suffered from low B12 and Vit D. I DIY most of my blood tests now and decide on my vit supplements based on very good advice from this website. It is scandalous how the medics no longer treat low B12 / Vit d properly

[eddm in reply to crimple]

Thanks for the advice! I’m aiming to stop my anti-depressants in the next month or so as they have done nothing for my health. All they did was stabilise my mood so that I didn’t suffer from extreme highs and lows. Now I’m just feeling lows and I’m certain it’s because of this constant exhaustion. I’ll look into the pernicious anaemia society, and shove it in the face of my doctor. If he doesn’t want to give me the jabs more frequently, I’ll threaten to buy them off some dodgy website (won’t, but maybe he’ll take me seriously).

I wish people around me could understand this exhaustion; my mum tells me I’m doing myself no favours by staying in bed, sleeping and missing the sunlight, but she doesn’t understand that I physically can’t hack it.

Thank you, you make me feel more human. I wish I’d seen this forum sooner, because unless you’re going through it, or have gone through it, it’s like nobody is taking you seriously!

[MIckeyrow in reply to crimple]

Hello I am interested in how to DIY your own blood tests to see if my vitamins are working . Same I have low B , D and folate low . Thank you crimple

[crimple]

Keep coming back here for advice. It made a huge difference to me and helped me make a lot of progress dealing wih my hypo and antibody issues.

In my darker moments I sometimes wish a plague of hypo on the medics so they can have a taste of their own ineffectual medicine.

Maybe the biggest plague should affect the pharmaceutical people, especially those who hike the prices of medicines to line their pockets whilst fleecing NHS.

[eddm in reply to crimple]

In all fairness I have the exemption for prescription costs now due to the thyroid, which has helped me so much! But if those costs weren’t so high for the pharma companies then maybe doctors could do further tests, or make more referrals, and actually pretend to give a damn.

I only joined the forum today, but I went from curling up in a ball crying because I can’t take it, to realising it’s going to be a battle but a lot of people here are fighting the same one. We need to push for better treatment!

[Marz in reply to eddm]

Have you joined the PAS forum here on Health Unlocked ? Depression is neurological - and if you suffer with neurological symptoms then your B12 injections should be more regular than every 3 months. Please read the LONG paper below with the Guidelines for Folate and B12 Deficiency. B12 works with Folate in the body .... so both need to be good.

bcshguidelines.com/document...

There are loads of very helpful people there - just like here

Anti-depressants often negate your thyroid treatment too ....

[crimple]

Yes, knowing that plenty of others understand how we feel is comforting in a strange way. At least you will know that you are not going mad or that it is " all in your head" which is the sort of response too many on here have had from our so called health service. From personal experience, coming to this site is the first step on the journey to health. It is not going to be a quick fix, but gradually you get to know and understand more by coming to this site. There is a lot of new information to absorb and at times I struggled to get to grips with it all but one step at a time you will regain your health.