New to the world of Thyroid: On 6 July shortly... - Thyroid UK

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New to the world of Thyroid

BenHall1 profile image
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On 6 July shortly after getting up I felt some weird sensations, namely, although walking in a straight line my senses told me to was walking to the right. I was light headed but NOT dizzy, a combination of fading vision ( fading in and out and returning to normal and partially blurred vision), also misty/hazy vision at different times, blood pressure quite high for me. Rang in sick (I'm a bus driver) however as the day progressed I became more and more tired. Over the next few days I was sleeping for England, so, so tired and sleepy.

Rang GP who organised blood tests and told me to organise eyesight tests. Also banned me from driving, car and bus. Blood tests were done on 11 July and eyesight organised for 15th July (today). Yesterday morning GP surgery rang and advised blood tests were all OK except my blood numbers for Thyroid were 0.303, suggesting a low Thyroid count. I was told to arrange another blood test for Thyroid in a months time. New test date is 18 August.

I'm 78, reasonably fit with only two other medical conditions - atrial fibrillation (highly controlled and not in the least troublesome) and osteoarthritic joints, quite troublesome at times with pain levels. I'm on a range of medication, some for high blood pressure, an anticoagulant and a beta blocker. For pain relief its CoCodomol 30/500 (prescription grade).

Can anyone tell me about this new world I've entered. Is it progressive ? Is it genetic/hereditry ? Is it more common in women or men or is it equally distributed over the genders ?

Any advice would be appreciated. Very many thanks.

John

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PurpleNails profile image
PurpleNailsAdministrator

Welcome to forum.

Ask for a printout of results, with the lab range.

When GPs screen for thyroid issues they often test the TSH (Thyroid Stimulating Hormone). The TSH is a pituitary hormone which signal the thyroid to produce.

When the TSH is low it is often because thyroid hormones are too high. (Hyperthyroid) The lab should have tested FT4 & FT3 & thats what you need to know.

Hyper can be continuous or a transient fluctuations which can precede a drop in function (hypothyroid).

Most thyroid issues are autoimmune, but not in every case. With Hyper Graves the immune system stimulates thyroid which can last many months. There is a treatment to control levels. Autoimmune thyroiditis or Hashimoto’s attacks and damages the thyroid. This can often occur gradually with transient level hyper early on from the damage releasing hormone. It’s progressive in that as the damage continues the thyroid has less & less ability to function. Before that occurs the low levels are replaced with a synthetic replacement.

Doctors just tend to refer to hyper or hypothyroid or overactive/ under active & don’t look at the autoimmune aspect.

It can occur in families and therefore has a genetic factor. Thyroid issues affect women to a much greater degree than males.

How was your eye test? Any pain in eyes / change of appearance of eyes?

BenHall1 profile image
BenHall1 in reply to PurpleNails

Hiya PurpleNails,

Many thanks for your comments.

It is all a bit overwhelming at the moment learning stuff about Thyroid. Mind you, I'm still not convinced about the low reading.

I have requested at printed version of the blood test results. Waiting ... 😱

I find this lab range stuff unbelievable ........ are you telling me that a lab in Penzance could have a different range to a lab in, say, fer instance - Middlesborough and both could be different to another in Chester. Please say you're joking !!

My eyesight examination turned out to be perfectly fine. My vision meets the standards of DVLA for driving a bus and/or a car. There is only a very, very slight deterioration since my last prescription in April 2023, however, they did detect a cell growth in the lower left quadrant in the left eye. I've had cataract surgery in both eyes, the left was done in 2018. This happens in about 20% of surgery cases. No need to panic. When there is a further deterioration they can do a clean up with a laser.

No pain in the eyes, no other changes.

Many thanks for your comments.

John

ERIC107 profile image
ERIC107 in reply to BenHall1

Labs using different ranges for reporting data is absolutely fine - as long as you're aware of it. The main thing is to understand where your personal results are within a specific lab's reporting range.

The different ranges arise due to labs using equipment from different manufacturers to measure the same observations. Different manufacturers make their equipment in slightly different ways, although the final outcomes are (broadly) similar.

To use an analogy related to motor vehicles, the speed range of 1L Nissan Micra is very different from the speed range of a McLaren F1 motor car... let's say 0 - 110 mph and 0 - 250 mph respectively. A speed reading quoted as "60 mph" is not useful unless we know which car was used, i.e. which range to consider. For the Micra 60 mph is 54.5% of the speed range, whereas 60 mph is 24% of the speed range of the McLaren - both cars are valid motor vehicles and 60 mph is a valid reading - but useless without the additional information. Thus it is for thyroid hormone readings (and all other things, such as vitamin levels, etc.). Hope that makes sense!

BenHall1 profile image
BenHall1 in reply to ERIC107

Thanks for that.

Glad I don't rely on labs all the time for the blood tests I have to do. What a mess ! I just hope any one given surgery anywhere in the NHS system only deals with one specific laboratory and not a number of them, a licence for mistakes comes to mind.

bookish profile image
bookish in reply to BenHall1

Just to make things more complicated, reference ranges are a % calculation based on a group of allegedly healthy people, but of course many of those people will have undiagnosed conditions, and you can be healthy but sit naturally towards outlying top or bottom end of range, or unhealthy and sit squarely in the 'healthy' range....For thyroid and other figures I use the range calculator so I know what my percentage through the range is for each set of figures, then you stand a hope of comparing one lot with another.

SlowDragon profile image
SlowDragonAdministrator

Welcome to the thyroid forum

Looking at your other posts you’re based in U.K.

blood numbers for Thyroid were 0.303, suggesting a low Thyroid count.

You need more information than this……probably TSH….but you need more info…..and just testing TSH is completely inadequate

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Come back with new post once you get results

Was thyroid test done early morning?

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

low vitamin levels are much more common as we get older ……especially low B12…..and especially if you have thyroid issues

Some of your symptoms sound like possibly low B12

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

Jodypody profile image
Jodypody

If you’re on beta blockers and blood pressure reducing medication that might need a tweak too. What was your pulse rate

Jodypody profile image
Jodypody

I believe it’s more common in women than men and my grandmother had hypothyroidism too so I’m guessing it’s genetic. It’s not life threatening and not necessarily progressive only if left untreated. It’s just a royal pain in the posterior until you get your thyroid levels in check.

Hollins profile image
Hollins

Welcome to having a thyroid problem. The good news is this is very common. There's loads of info all over the internet. Thyroid UK is good, so is the British Thyroid Foundation who have lots of patient leaflets.

Your blood result is probably just at the bottom of the normal range and might mean your thyroid is overactive. (Every lab and every hospital have different levels of 'normal') Low blood test & high thyroid sounds daft but isn't. Your doc is right to do another test in a month, it should lead to more thyroid substances being measured if it's still low.

Have a look at thyroiduk.org/if-you-are-un... or btf-thyroid.org/thyroid-fun...

Thyroid problems are treatable but you can be on tablets for a long time

All the best

serenfach profile image
serenfach

I had exactly the balance problems and eye problems you described, but mine were down to the BP medication which was new to me. Check your BP leaflet, mention this to the GP and he can check this and your thyroid at the next appointment. I hope you feel better soon.

BenHall1 profile image
BenHall1 in reply to serenfach

Hiya serenfach,

Thanks for your post/reply.

Your comments are really interesting ....... medication. Hmmmm !

Since I posted I've had a range of blood tests which were all in the normal range except one, a Thyroid TSH test which showed my blood count to be a bit low (0.303 compared to the low end of the range of 0.35). My GP and I are both disregarding this reading ... however, I'm rebooked for a range of Thyroid specific blood tests on 18 August, because many other Thyroid tests were not done for a range of excuses.

Next, I've been to my Optician who prescribed new lenses as recently as April 2023, and whilst there is a sight deterioration it's not abnormal. She also found a cell growth on my new lenses implanted as a result of Cataract surgery in 2018. Not needing treatment at the moment but in anycase it can be cleaned up with laser treatment. Other than that eyesight meets all DVLA requirements for driving bus and car.

I then raised the issue of medication. I have been on Bisoprolol for 13 years since being diagnosed with Atrial Fibrillation. Bisoprolol's primary purpose is to control heart rate however, it also is used by many healthcare practioners for BP control - and BP has been a problem for me since around 2005. However, I'm loaded with drugs for BP, namely, Ramipril and Felodopine ... then the influence of Bisoprolol.

I told my GP that although Bisop has served me well for 13 years its time now for me to move on and I have suggested Nevibolol, so this Thursday I have an appointment with my Surgery Pharmacist to review these to meds. My personal view is that meds are causing my problems. Will post more later.

John

bookish profile image
bookish

Hi Ben, I'd be wanting to double check vit B12 and folate (B9) in those blood results. Testing for B vits is far from straightforward but you need serum results first. Does your range of medication include a PPI (eg Omeprazole), Metformin, or any anti-seizure meds? Both afib and osteoarthritis could be B12 connected. Very common, even more so as we age and with dodgy thyroid. Cheers

BenHall1 profile image
BenHall1 in reply to bookish

Bookish,

My medications are :

Simvastatin 40mg ... daily started around early 2007. At the same time I started on Ramipril 10mg.

Bisoprolol (5mg) and Warfarin ... started with AF diagnosis in January 2010.

Felodopine (2.5mg) ... started around 2013.

My osteoarthritis pain is not really a problem at this time of year. When there is a weather change, i.e. when barometric pressure falls and humidity increases my pain level increases amazingly. I just take CoCodomol 30/500 for pain relief which mainly does the job. So winter time becomes an endurance test.

Thank you for your comments.

John

bookish profile image
bookish in reply to BenHall1

Hi John, thanks for that. My reason for asking is that the meds I listed are likely to deplete Vits B12 and folate over time. To the best of my knowledge, those that you are taking will not do that, but of course you may still have immediate or longer term negative effects. Statins for example - you've been on simvastatin for quite a while and they can deplete CoQ10 (coenzyme Q10) which is important for heart health as well as deficiency often causing muscle pain and weakness. If you aren't already taking CoQ10 it might be worth suggesting to your consultant, although their response may depend on personal view - NHS page on statins re CoQ10 says some take at the same time but 'no clear evidence of benefit and more research needed'........I disagree (and doubt that they will ever do the research), but you can make up your own mind on that one. And there is such a thing as too low for cholesterol, so have they checked it recently.

The increase in pain due to low pressure changes is very familiar to me, also get it with windy weather so struggling right now as we enter week 3 of changeable weather. I don't have osteo but the likely cause/contributory factor is the same - dysregulation of mast cells. One of the many, mostly inflammatory, chemicals released by degranulating mast cells is tryptase, which is cartilage degrading. I get rib cage and sternum pain as well as joints, and anywhere else cartilage, like ears. There are many triggers for those of us with over-enthusiastic mast cell activity, pressure changes and wind being two, and you don't have to have full blown mast cell disease to be affected. Mast cells are very closely interconnected to nerves so the pain is a given. Have a look at

med.stanford.edu/news/all-n...

and

sciencedirect.com/science/a....

Osteo needs good blood flow and demyelination is implicated, so back to the need for good B12 and folate levels. Nerve pain medications are said to help, but Gabapentin (common) may deplete B12/folate and also acts on the same brain receptors as magnesium, so I'd try the magnesium first (and magnesium calms mast cells and helps clear histamine). I use extra Vit C as well, plenty of fresh ginger and most importantly for me, quercetin, which is a mast cell stabiliser and natural antihistamine (like Vit C).

Irregular heartbeats of any kind, including afib, are one sign of poor B12 availability and processing, so worth checking even though that process is not likely to be easy. (In basic terms, you can have a cellular deficiency at any serum level, so don't let them tell you anything within reference range rules out a deficiency. No single test can do that. If you are not supplementing and serum B12 is less than about 500 ng/l or more than 1000 ng/l then a bit more investigation would be a good idea, in my opinion.)

Best wishes

LindaC profile image
LindaC in reply to bookish

Excellent and informative - thank you!

BenHall1 profile image
BenHall1 in reply to bookish

Hiya bookish,

Thanks for your very thoughtful comments. I started taking CoQ10 shortly after I was diagnosed with AF and have taken it non stop ever since. No conflict at all with other medication I am taking, none at all. I'm not a medic or a scientist, BUT, I can say this that I am sure that it has helped me stay well now, at 78, I can still pass my annual bus drivers medical and I driver double deckers in College Term time part time 30 hours a week. So, on balance, it can't be doing me too much harm, as I say, I can't quantify this medication good or bad on a scientific basis.

Annually, ( in Sept) I have a range of blood tests including Cholesterol to check on what is happening to other organs as a result of long term taking all this medication I have described. Nothing has ever been 'red flagged'.

Your last two paragraphs leave me bewitched, baffled and bewildered. So, I must certainly examine those points you make in those paragraphs.

Many thanks for the trouble you have taken.

John

bookish profile image
bookish in reply to BenHall1

Hi John, good decision with the CoQ10 and very pleased that it seems to be helping.

When you have your next bloods done, ask them to double check that folate and B12 are on the list (not routinely done, why is beyond me) and then get a copy and let us know results should you feel inclined. Things from full blood count like MCV, MCH, RDW, Hb also could give you pointers, especially as trends over time.

As Hollybushroad says, best not supplement any B vitamins until testing done as it skews the results (although results don't have to be at lower end of range for you to be symptomatic).

All the best

BenHall1 profile image
BenHall1 in reply to bookish

bookish,

Many thanks. Currently waiting to hear from my GP as to what will happen next. I don't expect this to be a quick process and I'm certainly not holding my breath as to a nice positive reaction from her. The amount of secrecy in this bloody surgery would make it easier to deal with MI5. Easier to pull hens teeth. NHS is a loathsome organisation now at least at a Surgery level.

John

bookish profile image
bookish in reply to BenHall1

Agreed. Hoping for better than you expect, just as a nice surprise.

Hollybushroad profile image
Hollybushroad

Ur symptoms are suggestive possibly of Low B12 and folte deficiency.Don take any b12supplements until GP does further testing as supplement ing will skew levels and ,then you won't have a baseline. Even if u ring surgery afterwards receptionist may tell you your b12 levels are "normal" within range so get a copy of your blood results. Levels at lower end of range can cause B12 deficiency symptoms and some of your symptoms tie in with b22 deficiency

BenHall1 profile image
BenHall1

Hi,

My latest lot of blood tests were broad based as a first step in dealing with another medical issue, apparently non cardiac or thyroid related. This reading came up out of the blue. I don't believe it. Anyhow I have requested a hardcopy of the blood test report. I also have Thyroid specific blood tests booked for 18 August.

The problem is some of my symptoms tie in with one of my drugs and blood sugar (type 2 diabetes). I'll have more of an idea when I get my hardcopy report.

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