Newbie Advice Please - NHS not helping - Thyroid UK

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Newbie Advice Please - NHS not helping

Angelanna
Angelanna

So I haven't been 'right' for 20 months at least but finally sought help from GP about 8 months ago. I went in assuming peri-menopausal but left with a fluoxetine prescription. I didn't think I was depressed but agreed to show willing and took them for 6 months. They made no difference.

My sister is hypo and recognised my symptoms. I knew NHS would do nothing un;ess on death's door so decided to monitor my own thyroid privately. They flagged a problem including B12. Went back to GP saying physical symptoms worse than ever and he reluctantly repeated TSH and B12 (nurse put on T4 for me) and no surprise, all was 'normal'. I went back and said fine, you tell me what's wrong with me then. He said I'd had everything tested but would do ESR and Iron just to cover everything off. They really have tested everything including coeliac, glandular fever, anything that could explain my symptoms. Which are:

Fatigue - can't keep my eyes open at work, yawn all day, have no energy to be the mother I used to be to my two children.

Weird and constant 'aches' in both legs. Not pain but completely distracting. Like a viral type ache.

Weak arms and legs

Hair everywhere in the bathroom and not on my head!

Brain fog

Desire to be alone/solitary

Would happily stay at home all day if I didn't have a job and children to prioritise. I had more drive and energy with a newborn and toddler to deal with!

Prozac didn't solve anything.

I am booked to see a private GP end of the week and I am currently keeping my NHS GP appointment for the week after. Hedging my bets! I want someone to treat the person and the symptoms not the numbers. There is something wrong with me and I think best part of two years is too long not to be living the life I used to have.

Any advise on what to say to the private GP to get some empathy and action? I've done a little chart with the data I have. I am at my wits end and sick of having to fight so hard to be heard.

15 Replies
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shaws
shawsAdministrator

Why are doctors so willing to prescribe anti-depressants that don't have a blood test but go on 'clinical symptoms' alone. Except for anything to do with the thyroid gland.

The huge pity is that all doctors and endocrinologists have been told not to diagnose us in the UK until the TSH reaches 10 (due to some gobble-de-cook thought up by someone whose brain wasn't working - he/she probably had undiagnosed hypothyroidism). In other countries people are diagnosed when TSH goes 3+ with symptoms.

You are blatantly hypothyroid due to your Free T4 and Free T3 being below range - when they should be at the top. This is from TUK and take copy to doctor:-

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

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

shaws
shawsAdministrator

All blood tests for thyroid hormones have to be at the very earliest (you may already be aware of this) and also allow a gap of 24 hours between last dose of levothyroxine and the test and take afterwards. This helps keep your TSH at its highest as that's all they look at.

Do you know if the Private GP knows anything about hypothyroidism as Thyroiduk.org.uk do have recommended doctors and you don't want to waste money. Email Dionne at TUK and request a list of doctors email below:-

tukadmin@thyroiduk.org

Others will respond re vitamins/minerals.

Angelanna
Angelanna in reply to shaws

Thanks shaws - it is so frustrating!!! I've got a bog standard private GP but hoping they will at least listen and be open to me trying levo. I am in Northwest.

When I got telephone consult with local GP on test results and told everything is fine I said 'so what's wrong with me?' And this female doctor started back on the depression thing! Have I done the self-help stuff?? No, because self-help CBT won't wake me up and alleviate my PHYSICAL symptoms.

shaws
shawsAdministrator in reply to Angelanna

It is so ridiculous that they prescribe for a 'symptom' but not for our whole body - and it is this which is affected - from head to toe and the millions, if not billions of T3 receptor cells all need T3 within them for us to function without effort, discomfort or pain.

With low free t4 and low TSH you probaly have secondary or central hypothyroidism (where TSH cannot rise) GPs are not trained to recognize this so mention it and ask for a referral to an endo or a pituitary specialist. Anti-depressants make extra funding money for the GP, so they care about that more than your health.

Your b12 is far too low, bloomin range should start at 500 imho as anything under 500 can cause neurological symptoms... When my b12 was 210 I had numbness in finger tips and toes which eased after a few months of supplements but never gone 😕 Have you had ferritin checked? I hate the folate range saying >5.4. Imo yours is too low. Your vitamin d is awful, should be over 100 and nearer 150. Has your nhs GP tested vit d?

Sorry my tablet is playing up doesn't want me typing it seems. Hopefully someone more knowledgeable will be along soon

Just waiting on NHS repeated ferritin test but private was okay. Mid-range. Luckily a hot summer will have boosted vit d but am taking a spray now just in case. Will check those privately again in a couple of months. Haven't felt any changes since supplementing with B12 but a repeat test will tell if it has had any effect.

Will see what private GP says. Surely if I can 'trial' prozac to keep a doctor happy I can trial levo to see if it changes my life???

fibrolinda
fibrolinda in reply to Angelanna

If you click the blue reply button below my post I will get informed when you answer me 😀 Not just me that applies to lol.

How much b12 are you taking and which one?

How much vit d are you taking? You need to take vit k mk 7 with the vitamin d, it helps direct calcium increase from vit d to bones and teeth. Magnesium also recommended. Flippin tablet driving me nuts sorry have to re type over and over grrr

. SeasideSusie has the best advise on supplements so if she isn't to busy hopefully she will respond 😊

Angelanna
Angelanna in reply to fibrolinda

This replies to SeasideSusie also -

B12 - only started supplement a month ago after GP refused to test for PA. It's called Jarrow Methyl 1000 mcg. Will stop the supplementation and ask for them to investigation central hypothyroidism.

Vit D is: Vitamin D3 spray 3000 iu.

SeasideSusie
SeasideSusieAdministrator

Angelanna

OK, let's have a look. Please remember I am not medically qualified so am not diagnosing, but just giving my opinion based on reading, research and personal experience.

TSH: 1.8 (March) and 2.25 (June) [range 0.27-4.20] then 1.6 (July) [range 0.2-6.0] - all in the lower part of the reference range

FT4: 11.2 (June) and 12 (July) [range 12-22] - below and bottom of range

Total T4: 61 (June) and 62.3 (July) [range 66-181] - below range

FT3: 4 (June) and 4.45 (July) [range 3.1-6.8] - low in range

Your Total T4 (which measures bound and unbound T4) shows that your thyroid isn't producing enough thyroid hormone (T4) to bring it into range. This means that your FT4 (unbound T4) is below/bottom of range. T4 is a pro-hormone and is inactive, some of it converts to T3 which is the active hormone that every cell in our bodies need. Your body, to keep you ticking over at the moment, is producing as much FT3 as it can. Eventually, this will lower even more as your body wont be able to keep this up with such poor level of T4.

I think that your results suggest you may have Central Hypothyroidism. This is where the problem lies not with the thyroid but with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism). This is nowhere near as common as Primary Hypothyroidism (where TSH is raised and FT4 is low) so most doctors (even endocrinologists) haven't even heard of it.

I would take some information to both your private and NHS GP and suggest this needs looking into.

bestpractice.bmj.com/topics... - you can only read part of the Summary, click on READ MORE. Your doctors will be able to read the whole article as I expect they subscribe to BMJ (British Medical Journal).

Another article:

ncbi.nlm.nih.gov/pmc/articl...

I would do some further research into Central Hypothyroidism so that you can take as much evidence as possible to your doctors.

B12: 193 - 198 - 201 [180-910]

Low enough to warrant further investigation. Do you have any signs of B12 deficiency - check here b12deficiency.info/signs-an... If so then list them to take to your GP to discuss. You really need testing for B12 deficiency/Pernicious Anaemia and may well need B12 injections. You should stop your B12 supplement because it will affect the result of any further testing. How long have you been taking B12 and what are you taking? To get a baseline we need to be off B12 for about 4 months.

Folate is low and should be at least half way through it's range. Folate and B12 work together. Yours isn't deficient so unlikely to get anything prescribed, so a good B Complex will help raise it, but do not take it (nor folic acid, nor folate) until further investigation into your B12 as been done. Taking any type of folic acid/folate supplement will mask signs of B12 deficiency. When further investigation into B12 has been done and injections or supplements started, then you can start taking a B complex. Good ones are Thorne Basic B and Igennus Super B.

Vit D: 65nmol/L

You've done well to increase it from 35 to 65nmol/L. The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L. What dose are you currently taking?

When the recommended level of 100-150nmol/L has been reached, then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

There are important cofactors needed when taking D3 as recommended by the Vit D Council -

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

Ferritin

What was your "OK" result when tested privately?

thanks so much Susie. Ferritin was as follows:

March: 116 (13-150)

June: 77.8 (13-150)

Hopefully most recent will be available weds/thurs.

SeasideSusie
SeasideSusieAdministrator in reply to Angelanna

Oh, they're not bad Angelanna.

Eating liver or liver pate occasionally will help keep your level pretty stable, or black pudding and other iron rich foods. I got my ferritin up eating liver and now take 1 x BloodBuilder tablet a week if I'm too lazy to cook liver (which I often am).

Everything just looks like it has been struggling: from low FT4 and Total thyroxin, and your Vit/ min levels, so not surprising you feel bad. Try to convince your Gp(s) that a trail of 50 mcg levothyroxin ( 25 mcg is starter dose for very young/elderly/known heart problems) for 8 weeks might make improvements ( alongside you improving your Vit D, B12, folate and ferritin to optimum levels in upper end of ranges as SeasideSusie suggests)... it is only a replacement hormone, not a drug like the antidepressants. Levothyroxin is cheap which should have Gp appeal too. But it can take months, if not longer, to feel better. Have you ever had your thyroid autoimmune antibodies ( TPO and TgAb) tested- the vaste majority of hypothyroid cases result from having these antibodies, referred to in most of the world( but not so much in GB) as Hashimoto's disease? Might have to have them tested privately as NHS only really does TPO, then ignores results anyway!

Hi Judith, I did the Blue Horizon Thyroid 11 which includes the antibody test.

June was:

Anti-thyroidperoxidase abs <9 (<34)

Anti-thyroglobulin Abs 10 (<115)

There is an Endo at the same hospital with a interest in pituitary issues etc but he wants a referral before he'll see anyone so will push private GP for that if I can't get a trial. I am so determined not to be fobbed off.

Just wanted to update - I saw the private GP on Saturday. I was in there almost 50 mins in the end and it was like an episode of House. He asked me tons of questions to work through all the differential and looked at my results and notes I had made (so I didn't forget anything.) As I am self paying he is going to speak to an endo colleague about my results to see if in their opinion they would cause symptoms. He felt it was a red-herring but at least he is asking a specialist. He also took blood to check for Lupus or Lyme Disease. I read up on Lupus after and it threw up symptoms I never even thought of as symptoms so it feels like a good road to go down investigation-wise. This ENA is included if ANA is positive so will be half way there if they both come up positive. He also wondered whether sleep quality is the issue, it may be but as I sleep alone I'll never know, but my instinct knows that isn't the source of my problems.

I am annoyed that I had to pay to move things forward as NHS GP said Iron and ESR were the last tests to do. Apparently not! But I am happy to find the money if it means I can get treatment of some kind sooner rather than in a few years when I am on my knees.

Back for results next weekend but relieved to have finally been listened to. I've mentioned time and time again that all my immediate family (parents, sibling & son) have autoimmune conditions but no one has ever bothered to check my blood for an autoimmune response. Hardly a leap is it? Thanks to all who have replied and validated my feelings. What a great resource.

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