Newbie Seeking Advice

[JulesL82]

Hi everyone,

I'm so happy to have found this forum! I've spent quite some time reading through previous posts and the advice/support is amazing. Decided it's time to see if anyone can help me with my first post.

I have been experiencing symptoms of hypothyroidism for over 5 years now - weight gain, fatigue, aches and pains - and the rest! Like many of you, my blood test results are always considered 'normal' in terms of my thyroid. I know that my health is far from normal - I have gone from being a slim, active, positive person to someone whose life revolves around napping!

I have previously seen an endocrinologist which wasn't a positive experience - they confused me with another patient and in a letter to my GP said that I was a smoker - completely incorrect. When I pushed, they did do a thyroid ultrasound which they said was normal. I have had different feedback from different drs - some say I have a goiter, others insist I don't.

Out of sheer desperation, I recently paid for a private blood test via Medichecks as my G.P would not do the full range of tests that are needed to identify potential thyroid issues. Below are the results from this test (underlined) and previous tests over the last few years (separated by /) The reference ranges are those from my recent Medichecks test (underlined) and the others are those used by my G.P:

TSH: 0.668/0.35/0.70/0.90 (0.27 - 4.20 / 0.35 - 5.0)

Free t4: 15.05/15.5/14.5/13.2 (12.00 - 22.00 / 9.0 - 21.0)

Total t4: 144.6 (59.00 - 154.00)

Free t3: 5.06 (3.10 - 6.80)

Total t3: 2.2 (0.9 - 2.5)

Reverse t3: 22 (10.00 - 24.00)

Reverse t3 ratio: 14.97* (15.01 - 75.00)

Thyroglobulin antibody: 10.460 (0.00 - 115.00)

Thyroid peroxidase antibodies: 17.39 (0.00 - 34.00)

Vitamin B12: 1476/708 (140.00 - 724.00) - I had 3 monthly B12 injections a few days before!

Folate (serum): 6.55 (3.89 - 26.80)

25 OH vitamin D: 130.1/25 (50.00 - 200.00) - on oral supplements

CRP: 11.4/31/35 (0.00 - 5.00 / 0 - 10)

Ferritin: 64.71/42 (13.00 - 150.00 / 15 - 200)

Albumin: 34/32 (35 - 40)

The only result that Medichecks really flagged up (apart from my raised CRP which is an ongoing, unexplained issue) was the FT3/rt3 ratio. Their feedback states:

'Your FT3/rT3 ratio is low which could suggest that you are not getting sufficient free triiodothyronine (FT3) into your cells. There is currently little scientific research into the FT3/rT3 ratio, but some experts believe that this could lead to symptoms of hypothyroidism (slow metabolism) even though your thyroid levels are at normal levels.

You may wish to discuss these results with your GP although you should note that it may be difficult to get advice and treatment for elevated rT3 or an abnormal ratio through conventional channels.'

I have shared the results with my GP who won't acknowledge them - she tells me this is outwith her area of understanding and that she doesn't need to act on private results - if the NHS don't do the tests, the NHS won't treat the findings. I was quite upset as she suggested I should perhaps stop seeking answers re my tiredness and other symptoms. She did agree to a referral to endocrinology but phoned me a few weeks later to say that my request for an appointment has been refused.

Apologies for the lengthy email but I'm hoping that by giving as much information as possible, someone reading this may be able to help. You may look at my results and feel that they are normal and that's okay - it's better to know either way to be able to continue to try to find a doctor willing to help me in some way or to consider what else may be causing my symptoms.

Thank you for reading!

[Mary-intussuception]

I'm sorry Jules, but I can't understand the TSH the way it is written.

I'm no expert but when I first looked I thought Thyroglobulin antibodies was high. But now I think I was confused by the way that is written ( nearly my bedtime!!!)

Have you considered applying for a copy of your hospital records?

You surely need to find out why you have been refused appointment. Is GP doing anything about it?

You could do with blood tests Full Blood Count and Liver Function Tests etc.

Is there a different Endocrinologist that you could be referred to or even a different hospital?

Did the Endocrinologist you saw send you for a Short Synacthen Test to check your adrenals?

I know it's not easy, especially with all the symptoms, but you are going to have to keep on at GP till you are seen, diagnosed and treated.

XMARY

🐥

[JulesL82 in reply to Mary-intussuception]

Hello Mary,

Thank you so much for your quick reply!

Apologies - in trying to give as much information as possible I have listed all my info in a rather confusing way! My most recent TSH level was 0.668 - the reference range for this was 0.27-4.20. In the past I have had TSH levels of 0.35, 0.70 & 0.90 across 3 different bloods tests (over around a two year period) and the reference ranges for these results was 0.35-5.0.

Requesting my hospital records isn't something that I have considered - it's something I may consider in the future. I had a tough time getting my blood test results even though I know I am legally entitled to them. The reason I have been refused an appointment with endocrinology is because in the referral, it referred to the finding of my private blood tests and the ft3/rt3 ratio. Basically I've been told it's not something the endo team at the hospital will explore when my standard blood tests are considered 'normal'. Given my previous negative experience with an endo, I had requested referral to a hospital with an endo department that is more highly regarded.

I had a short synacthen test a few years ago when I saw an endo privately - all results normal so I'm assuming my adrenals are all fine.

Thank you again for your response and your words of encouragement!

Jules

[HLAB35 in reply to JulesL82]

The short synacthen test was a bit of a waste of time as far as I was concerned (a couple of year's ago). Supposed to be done first thing in the morning, some nurses were sitting at a computer doing sod-all with me wondering what was going on. The endo's nurse finally arrived an hour and a half late and it was 11:00 by the time she did the test; hopeless.

Taking matters in your own hands by educating yourself is essential these days.

[JulesL82 in reply to HLAB35]

I'd totally agree - the short synacthen test was a waste of time. Not done at all properly at a private hospital but when I told them that I worried about the accuracy of the results they said it would make no difference. I disagree!

[Marz]

Do you have PA ? As you have B12 injections you could do with higher Folate levels as they work together in the body. A good B Complex will keep all the B's in balance. Could it be that you need more regular injections or supplementation between jabs ? Hypo and low B12 symptoms often overlap.

[JulesL82 in reply to Marz]

Hello Marz,

Thank you so much for replying. I'm afraid I don't know if I have P.A or not. My B12 was previously low and I was given oral supplements but they didn't work so my G.P started me on injections. That unfortunately apparently now means that I can't be tested for P.A. I think you are absolutely right - I feel that I do need the B12 injections more regularly but my G.P just won't entertain it - the NHS guidance is 3 monthly so I get them 3 monthly. Due an injections in the next few weeks so will try again! I'd love to say that the injections make me feel great but I don't know that I notice too much of a difference. I do use a B12 oral spray when my injection is near to try to keep my levels up but I'm not too sure that it really works.

Thank you again for replying - your thoughts and advice are very much appreciated!

[Marz in reply to JulesL82]

Is it just tiredness or do you have any neurological symptoms of Low B12 ? - if so then the treatment guidelines differ. Go to the main website of the PAS and check out the list of symptoms - they also have a Forum here on HU ....

pernicious-anaemia-society....

[JulesL82 in reply to Marz]

Thanks Marz,

This website makes for really good reading. I suppose I'm in a tricky position because they can't tell if I have P.A or not now that treatment has already started. I do have a lot of the symptoms but don't find that the B12 injections make much of a difference to me. I'm a few weeks away from my next injection and feel more tired than usual and I do have a lot of the P.A symptoms but I can't say I notice a significant improvement after each injection.

Thanks again for sharing the link to the P.A.S website - I've found this really helpful.

[Marz in reply to JulesL82]

Could you self inject B12 ? Folate ?

[JulesL82 in reply to Marz]

Hi Marz,

It may come to the point where I consider self injecting but I still have hope (albeit dwindling!) that drs will help. So frustrated though - I went to see a GP today - not my regular dr - and explained that I have noticed over the past 3/4 B12 injections that for a few weeks before I am just exhausted and I asked if there was the option of having the injections more frequently. It was a flat no - she acknowledged that lots of people report feeling like that for weeks before their next injection but that its an unproven phenomenon often caused by people reading about it online. The real kicker for me was that she saw my security pass for work and basically said that because I am still able to work, my symptoms can't be that bad! I told her that I have had to cut everything else out of life in order to be able to work because I have to! It's almost laughable and I just wish that they could feel the way that we do - even for an hour- and I have a feeling they may be a little more understanding! I do need to get my folate levels up and am looking at supplements.

As always, thank you for your support and advice!

[humanbean in reply to JulesL82]

its an unproven phenomenon often caused by people reading about it online.

It's strange. This phenomenon only occurs in the UK where doctors are scared of giving people sufficient B12 to help them feel well.

[JulesL82 in reply to humanbean]

Funny that isn't it!!!!

[milupa]

Hi - your highish RT3 and elevated CRP stand out. High CRP indicates inflammation, but cannot say which type or where. Sometimes it is systemic inflammation. Lack of B12/folate or other conditions that keep the body in a state of alertness can cause reverse T3, it is a protective mechanism. It is definitely important to look into this further and I think it would be best to arm yourself with as much knowledge as possible. Why not look up RT3 on stopthethyroidmadness, for example?

I am so sorry to read about your GPs reaction, it must be so frustrating.

Good luck

[JulesL82 in reply to milupa]

Hi Milupa,

Thank you so much for your response - this makes a lot of sense to me. The CRP issue is an ongoing mystery. My G.P just dismisses it as being normal for me because it has been raised for so long but I know that it hasn't always been like that. I think you are spot on re folate. I went to see a trichologist this week because of hair breakage/loss and she has confirmed that my iron/folate levels aren't currently good enough for new hair to grow. I've been on ferritin tablets in the past but struggled to get my levels up on them significantly and found them really hard on my stomach. Good advice to look up info re rt3 on STTM - I've been on the site before but haven't seen this section.

It is very frustrating with my G.P. I think I'm in the same position as a lot of people - it's hard to get an appointment and when you do, it's rare to see the same G.P twice. When it's an ongoing issue like this, by the time they re-familiarise themselves with everything, your time is up. I know that is must be frustrating for a doctor when they can't find what's wrong with someone but when they give up or refuse to think 'outside the box' it makes me wonder if I will ever get a solution.

I have more faith in the knowledge, expertise and kindness of the people on this forum getting me back to full health - I just hope that I get there one day.

Thanks again.

[milupa in reply to JulesL82]

Hi - good advice from HLAB35!

Solgar's Gentle Iron has worked well for me. Even now when my hair starts to shed again I add a few capsules to my weekly line up of supplements.

I also switched to 100% natural haircare and haircolour but that's a different story.

Also I recently read (but cannot find a believable source right now) that folate levels need to be good before starting B12 supplementation, otherwise symptoms might appear or worsen. Maybe someone else know more about this?

Happy Easter!

[HLAB35 in reply to milupa]

I don't know about that precisely, but I think the two have to be in line with each other. Basically you don't want too much of either floating around unnecessarily....

drmyhill.co.uk/wiki/CFS_-_T...

Needs to be read a few times to understand the half of it! However, really useful and should be compulsory reading for endocrinologists.

[milupa in reply to HLAB35]

Thank you for the link, HLAB35! I admire Dr Myhill's approach and wish I had known of her while I still lived in the UK, desperately looking for a functional medicine doctor. I have not read he page you linked to it looks very interesting.

I have a Chris Kesser article open on my phone which talks about over-supplementing methylation problems - it puts me to sleep after five minutes every time I attempt to finally read and understand it -- brainfog?

Happy Easter

[JulesL82 in reply to milupa]

Hi milupa,

I know what you mean - some of the articles that are worth reading are a challenge in themselves but I definitely have brainfog too! I've read a few of the C.K articles and think they are really informative.

Happy Easter to you too!

[HLAB35]

Your symptoms sound a bit like cfs / m.e / fibromyalgia (a group of related illnesses) and by that I mean proper physiological illness with thyroid and adrenal issues (can be autoimmune, but not a given); not the 'old-fashioned' idea of these illnesses which were classed psychological - that idea has been brushed aside by modern research.

drmyhill.co.uk/wiki/Categor...

The above website is really useful..

I think you'd benefit from good quality B complex as suggested above - one that contains methylfolate as it's much more absorbable than folic acid and p-5-p which is the best form of B6. This will help with your methylation cycle which will work with your B12. Alongside that, you should have vitamin d (looks like you're already taking that), magnesium (citrate is good), zinc and possibly selenium too plus Omega 3's in good quality forms as you've got lots of inflammation.

[JulesL82 in reply to HLAB35]

Hi HLAB35,

Thanks so much for taking the time to respond to me - much appreciated!

All of the suggestions that you have made re supplements sound really worthwhile so I will pick these up over the weekend. Omega 3's especially stand out as I know I don't get enough via my diet.

Thanks again!