Continuous Fatigue and Balance Problems - Thyroid UK

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Continuous Fatigue and Balance Problems

Henbud profile image
58 Replies

Hi All,

I'm desperately hoping that some of you can possibly help me. I'm a 55 year old guy who is struggling with fatigue ,palpitations and problems with my balance. I struggle to walk in a straight line and feel weak. I feel as though I'm going to pass out - although this has never happened.

My GP has recently arranged for a whole lot of blood tests to be done. Here are the results of those that I feel will be of interest to you :-

T.S. H. 4.18 (0.30-5.00miu/L)

25-OH Vitamin D 50.1 (50.00-250.00nmol/L

Serum Vitamin B12 398(170.00-730.00ng/L

Serum Ferritin 59 (22.00-322.00ug/L)

Serum Folate 9.6 (3.00-19.00ug/L

Serum Iron Level 19.2 (8.00-32.00umol/L

Saturation Iron Binding Capacity 72.2umol

Unsaturated Iron Binding Cap 53 (27.80-53.70umol/L

Transferrin Saturation Index 27 (20.00-50.00%

Over the past years my TSH has constantly been jumping outside of the higher end of the range and then appears to come back inside the range again. My GP has said that this is normal and does not suggest, at this stage, that treatment is necessary. He claims that the TSH would need to show a couple of consecutive readings at 10 or above.

I am really at the end of my tether with all of this and feel I can't go on much longer with these horrible symptoms.

In the past I was referred to a rheumatologist (for an unrelated problem) who arranged for some bloods to be done. He established that my Vitamin D levels were very low and instructed my GP to prescribe Invita D3 800 unit capsules (1×daily) on a long-term basis. I have been taking this for at least 5 or 6 years now.

I really would appreciate any help you can give me. Should you require any additional information please let me know.

Many thanks.

58 Replies
SeasideSusie profile image
SeasideSusieAdministrator

Henbud

He claims that the TSH would need to show a couple of consecutive readings at 10 or above.

Yes, that's correct, the guidelines do state that.

HOWEVER

5 months ago you posted that you had been diagnosed hypothyroid and started on 25mcg Levo - here is the post:

healthunlocked.com/thyroidu...

You were asked if you would post your thyroid test results - TSH, FT4 andFT3 - but you didn't respond. If you had done we could have helped you further at the time.

So, what has happened in the meantime? If you've had a diagnosis previously what's your GP on about saying you need 2 x over 10 TSH results? Surely you continued with your Levo and have had an increase in dose by now?

In the past I was referred to a rheumatologist (for an unrelated problem) who arranged for some bloods to be done. He established that my Vitamin D levels were very low and instructed my GP to prescribe Invita D3 800 unit capsules (1×daily) on a long-term basis. I have been taking this for at least 5 or 6 years now.

800iu D3 will never raise a low Vit D level to optimal, it's barely a maintenance dose for someone who already has a good level.

25-OH Vitamin D 50.1 (50.00-250.00nmol/L

So you can see your current level, after 5 or 6 years, is pitiful.

You might want to check out a recent post that I wrote about Vit D and supplementing:

healthunlocked.com/thyroidu...

and you can check out the link to how to work out the dose you need to increase your current level to the recommended level.

Your current level of 5nmol/L = 20ng/ml

On the Vit D Council's website

web.archive.org/web/2019070...

you would scroll down to the 3rd table

My level is between20-30 ng/ml

The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L (40-60ng/ml), with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L (50ng/ml).

So now you look at how much is needed to reach 50ng/ml and you'll see that they suggest 3,700iu per day.

Bearing in mind that your level is only 20ng/ml you could also look at the 2nd table for current level between 10-20ng/ml and you'll see that one suggests 4,900iu D3 daily.

My suggestion is that you supplement with 5,000iu D3 daily.

Retest after 3 months.

Once you've reached the recommended level then a maintenance dose will be needed to keep it there, 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. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.

D3 aids absorption of calcium from food and Vit 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. 90-100mcg K2-MK7 is enough for up to 10,000iu D3.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.

For Vit K2-MK7 my suggestions are Vitabay, Vegavero or Vitamaze brands which all contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.

Vitabay and Vegavero are either tablets or capsules.

Vitabay does do an oil based liquid.

Vitamaze is an oil based liquid.

With the oil based liquids the are xx amount of K2-MK7 per drop so you just take the appropriate amount of drops.

They are all imported German brands, you can find them on Amazon although they do go out of stock from time to time. I get what I can when I need to restock. If the tablet or capsule form is only in 200mcg dose at the time I take those on alternate days.

If looking for a combined D3/K2 supplement, this one has 3,000iu D3 and 50mcg K2-MK7. The K2-MK7 is the All-Trans form

natureprovides.com/products...

It may also be available on Amazon.

One member recently gave excellent feedback on this particular product here:

Here is what she said (also read the following replies):

healthunlocked.com/thyroidu...

Another important cofactor is Magnesium which helps the body convert D3 into it's usable form.

There are many types of magnesium so we have to check to see which one is most suitable for our own needs:

naturalnews.com/046401_magn...

explore.globalhealing.com/t...

and ignore the fact that this is a supplement company, the information is relevant:

swansonvitamins.com/blog/ar...

Magnesium should be taken 4 hours away from thyroid meds and as it tends to be calming it's best taken in the evening. Vit D should also be taken 4 hours away from thyroid meds. Vit K2-MK7 should be taken 2 hours away from thyroid meds. Don't take D3 and K2 at the same time unless both are oil based supplements, they both are fat soluble vitamins which require their own fat to be absorbed otherwise they will compete for the fat.

Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.

I will continue in a separate post below.

SeasideSusie profile image
SeasideSusieAdministrator in reply to SeasideSusie

Serum Vitamin B12 398(170.00-730.00ng/L

This is low. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Some people with a level in the 300s have been found to need B12 injections.

Do you have any signs of B12 deficiency – check here (important because your balance problems may be connected):

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results and if you have B12 deficiency is not detected and treated then this could affect your nervous system. B12 deficiency should be treated before starting folic acid because folic acid can sometimes improve your symptoms so much that is masks B12 deficiency.

If you don't then you could supplement with B12 sublingual. One bottle to bring your level up, take B12 plus a B Complex to keep all B vitamins balanced. Finish the one bottle of B12 then continue with just the B Complex.

Serum Folate 9.6 (3.00-19.00ug/L)

Folate is recommended to be at least half way through range. The B Complex will improve then maintain your level but this must not be started before further testing of B12 if necessary then start B12 first and a week later start B Complex.

Suggestions for B12 supplements which include two forms of bioactive B12 - methylcobalamin and adenosylcobalamin which you might want to check out:

Cytoplan sublingual B12 lozenges

cytoplan.co.uk/vitamin-b12-...

Nature Provides sublingual liquid

amazon.co.uk/Bioactive-METH...

Note that the Nature Provides supplement contains a much higher dose than the Cytoplan one.

For B Complex I have used Thorne Basic B for a long time and always been happy.

If you look at different brands then look for the words "bioavailable" or "bioactive" and ensure they contain methylcobalamin (not cyanocobalamin) and methylfolate (not folic acid). Avoid any that contain Vit C as this stops the body from using the B12. Vit C and B12 need to be taken 2 hours apart.

When taking a B Complex we should leave this off for 3-7 days before any blood test because it contains biotin and this gives false results when biotin is used in the testing procedure (which most labs do).

Serum Ferritin 59 (22.00-322.00ug/L)

Way too low. Should be half way through range.

Serum Iron Level 19.2 (8.00-32.00umol/L

Saturation Iron Binding Capacity 72.2umol

Unsaturated Iron Binding Cap 53 (27.80-53.70umol/L

Transferrin Saturation Index 27 (20.00-50.00%

When discussing iron panel results we usually refer to optimal levels as suggested by rt3-adrenals.org/Iron_test_... which are:

Serum iron: 55 to 70% of the range, higher end for men - yours is 46.67% which is low for a male.

Saturation: optimal is 35 to 45%, higher end for men - yours is 27% which is low.

Total Iron Binding Capacity (TIBC) Low in range indicates lack of capacity for additional iron, High in range indicates body's need for supplemental iron - you haven't given the range but I believe it is high.

Overall your iron panel suggests that you may benefit from supplementing iron but you must speak to your GP about this and hopefully get it prescribed and have regular monitoring every couple of months to keep an eye on your levels.

So you can see that all your vitamins need improving/optimising and we need to understand more about your diagnosis of hypothyroidism and your Levo.

Henbud profile image
Henbud in reply to SeasideSusie

Hi Seaside Susie, Thank you for going to the trouble of providing such a detailed response. You're absolutely correct regarding the original diagnosis of hypothyroidism. I decided to make an appointment towards the end of last year with a private endocrinologist. When I went to see him I took along all my thyroid blood results from the previous years - TSH,T3 and T4. As soon as he glanced over them he said that my results definitely suggested that I was hypothyroid. He said he would write to my GP and instruct them to prescribe Levothyroxine 25mcg. As a result of me having an isolated case of atrial fibrillation that had showed up on an exercise tolerance test a few years ago he suggested that we needed to introduce the Levothyroxine with a 'baby-step approach '. He stated that I should take 1 tablet on 3 alternate days a week for 4 weeks and then increase the dose to 1 tablet daily. I followed his instruction. I started to experience strange side effects once I got to the stage of taking 1 pill daily. I decided to speak to my GP about the side effects(hot flushes and palpitations) . My GP suggested that I should stop taking the Levothyroxine until he had had chance to refer me on to a cardiologist to check if there was any abnormality with my heart rhythm. This referral resulted in me being fitted with a two week heart monitor that would continuously record my heart activity during the two-week period. I waited quite a long time for this monitor to be fitted. It was only removed two weeks ago. I am still awaiting the results. Not long prior to having the heart monitor fitted my GP did some blood tests(including TSH) which came back at 4.18 (0.30-5.00miu/L). I made a telephone appointment to speak to my GP about this result to enquire whether I should now look at restarting the Levothyroxine. He said that my TSH was in the normal range and he didn't feel that I needed to continue taking the Levothyroxine at this stage. This is where I am at with the whole thing.

You asked me about the brand of Levothyroxine that I had been taking. The brand was Teva. You also mention the Total Iron Binding Capacity - there doesn't appear to be any mention of this on the blood result form that I obtained from my GP's practice - only the tests mentioned in my previous post. These blood tests are all showing under the heading 'Iron Profile '.

I am thinking I should contact the endocrinologist's secretary to ask his opinion on the restarting of the Levothyroxine .....but perhaps a different brand. I'm gathering from reading various posts on here that a lot of people are unable to tolerate the Teva brand of Levothyroxine.

Once again, many thanks for your kind help here. I really do appreciate it.

I look forward to hearing from you.

🙂Thank you so much!

SeasideSusie profile image
SeasideSusieAdministrator in reply to Henbud

Henbud

You also mention the Total Iron Binding Capacity - there doesn't appear to be any mention of this on the blood result form that I obtained from my GP's practice - only the tests mentioned in my previous post.

This will be your TIBC:

Saturation Iron Binding Capacity 72.2umol

and I wrote:

"Total Iron Binding Capacity (TIBC) Low in range indicates lack of capacity for additional iron, High in range indicates body's need for supplemental iron - you haven't given the range but I believe it is high."

It's possible that Teva was causing you problems and that a different brand may have been fine. However,

an isolated case of atrial fibrillation that had showed up on an exercise tolerance test a few years ago

Maybe expand on this. What was the reason for the exercise tolerance test? This is usually prompted by some kind of heart episode. Any monitoring or treatment for this after it was found?

Henbud profile image
Henbud in reply to SeasideSusie

Hi there, a good few years ago I was referred to a cardiologist because of a rapid,irregular heartbeat. The cardiologist decided to do this exercise tolerance test. During the test it showed evidence of atrial fibrillation. It was then decided that I should take 75mg of aspirin, 2.5mg of Bisoprolol and 20mg of atorvastatin on a daily basis. I was also fitted with an implantable loop recorder that would continually monitor my heart rhythm over the next 3 year. The data was sent electronically every 12 weeks to be reviewed by the cardiology department. During this 3 year period no further evidence of atrial fibrillation was identified. It was noted that I had several ectopic beats. I was told that I had a condition called supraventricular tachycardia. I was then discharged back to the care of my GP to manage the problem.

I hope this information helps. If there's anything further you need to know, please let me know.

Once again - many thanks!

SeasideSusie profile image
SeasideSusieAdministrator in reply to Henbud

OK, so that explains why the cautious approach to starting Levo. It seems as things are stable (presumably you're still on those prescribed meds) so with your TSH showing that your thyroid is struggling then maybe going back on Levo (but not Teva brand) is the way to go, increasing gradually and monitoring levels.

Henbud profile image
Henbud in reply to SeasideSusie

Hi there,

Thank you for your response. I've actually sent an email today to the endocrinologist's secretary asking him to instruct my GP to continue prescribing Levothyroxine (but not the Teva brand). Is there any particular brand that you might recommend?

SeasideSusie profile image
SeasideSusieAdministrator in reply to Henbud

Different brands suit different people. If you don't need lactose free Levo then it's just a case of avoiding Teva and seeing what you get and how you get on.

I've had Accord for many years with no problem - I always get this brand as it's on my record at the pharmacy. Best to stick to the same brand when you know you're OK with it.

Just for info:

Accord only make 50mcg and 100mcg tablets.

Accord also make and rebox the exact same tablet as

Almus for Boots in 50mcg and 100mcg tablets

Northstar for Lloyds Pharmacy in 50mcg and 100mcg tablets.

Northstar 25mcg tablets - beware - these are made by Teva.

Henbud profile image
Henbud in reply to SeasideSusie

Thank you. I could always go for the 50mcg and snap it in half whilst I am building the dose. On another point, I had an appointment with my GP this morning. I decided to mention that I felt that my vitamin D result was a little on the low side. He agreed that it was just on the edge and agreed to increase the current dose to 1,600 units daily for two months. Afterwards I should go back to the 800 units daily. I just nodded. I don't intend to do this. I'm going to up the dose to 5,000 units daily until I am at least 50% through the range. It just makes you wonder exactly what planet some of these GPs are on! ☹

SeasideSusie profile image
SeasideSusieAdministrator in reply to Henbud

Doctors are taught very little, if anything, about nutrients so really all they understand is "in range" with no understanding of "optimal".

Just aim, in the first instance, to achieve the level recommended by the Vit D Council, Vit D Society and Grassroots Health (100-150nmol). Some people are happy with 100nmol, I prefer to keep mine as close to 150 as possible. Once you have achieved the recommended level then reduce dose to find your maintenance dose.

Henbud profile image
Henbud in reply to SeasideSusie

I certainly will. I will update you in due course. Thank you for all your help and advice. I am truly grateful. Take good care. Catch you soon. 🙂

shaws profile image
shawsAdministrator in reply to Henbud

Oh! GPs who have no idea about the clinical symptoms people have before they are diagnosed.

GP phoned to tell me that my results were fine and I had no problems! I cried as I felt awful and you can click on my name you can read about my journey to be diagnosed.

Our 'old-fashioned' doctors needed no blood tests to diagnose as they all knew the clinical symptoms and patients got a trial of NDTs (natural dessicated thyroid hormones) which saved lives from 1892 and onwards.

I am puzzled why the 'experts' withdrew NDTs from being prescribed, despite its long-standing proof and leaving many people desperate.

Nowadays I have proof in that I was very unwell and had no knowledge of a dysfunctional thyroid gland like many people especially GPs.

Some months ago one of the GPs in the surgery phoned to make a statement and I told him 'that's wrong doctor'.

Henbud profile image
Henbud in reply to shaws

Hi there,

Thank you for your message. Firstly may I say 'good on you' for standing your ground with your GP and having the courage to tell him he was wrong! It would appear,the more I am learning about this vast subject, that GPs seem to have very limited knowledge when it comes to thyroid-related problems. It really is most concerning. I do hope you continue to make improvements with regards to your thyroid issues and there are plenty of brighter days ahead. Best wishes.🙂

Fifteen profile image
Fifteen in reply to SeasideSusie

SeasideSusie

Aavalabs has just brought out a new capsule containing 2000iu Vit D3 and K2 100ug in extra virgin olive oil.

it is very new and was developed in response to many requests from customers, including me, though I take their Vit D3 5000iu product. I use a lot of their products as they are excellent and easy to swallow. Radiotherapy after laryngeal cancer has left with with difficulty swallowing large tablets.

This Vit D3 + K2 has just been released. To let you know pricing, for 180 gel capsules it will cost £18.21. The introductory offer until 18th September is £ 14.57.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Fifteen

The problem with that is for anyone who needs to take more than that amount of D3 then there will be too much K2. For example, I need 5,000iu D3 daily and as 90-100mcg K2-MK7 is enough for up to 10,000iu then if I took 2 or 3 or those capsules I would be getting two or three times as much K2 than is needed.

These combined supplements aren't the right fit for everyone. For anyone who is interested Amazon currenty has this for £15.50

Henbud profile image
Henbud in reply to SeasideSusie

Hi there,

Can I ask you what you think of the Solgar vitamin range that can be purchased from health stores like Holland and Barrett?

SeasideSusie profile image
SeasideSusieAdministrator in reply to Henbud

They're not on my list of brands to use. I think there are better brands and if I remember correctly they seem to use a lot of excipients .

Henbud profile image
Henbud in reply to SeasideSusie

Thank you. I'll avoid the Solgar range then. Would you recommend the Tom Oliver Nutrition Magnesium Taurate 600mg(60 capsules - 1xdaily) Amazon £9.99?

SeasideSusie profile image
SeasideSusieAdministrator in reply to Henbud

Henbud

I use that one. However, I buy mine direct from Tom Oliver, the multipack of 3 which normally costs £24.99. If you sign up to their emails they send through offers from time to time. My most recent purchase (June) there was a special offer of 50% off which made 3 bottles £12.49 but because it was less than their free delivery limit I had to pay delivery of £3 so for 3 bottles I paid £15.49 instead of £24.99 and they're not short dated or any other reason to sell them off.

Henbud profile image
Henbud in reply to SeasideSusie

Thanks for your reply. That's a really good deal you got there. I've already ordered on Amazon this time. I'll order directly with Tom Oliver in future. Can I just ask you do you take 1 x 600mg capsule daily or on alternate days? I'm leaning towards 1 x daily. Just thought it was worth asking you what you do.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Henbud

The amount of elemental magnesium in that 600mg capsule is 200mg so 1 daily or even 2 if you want to take the usual 350-450mg elemental magnesium that is the suggested dose. I also take magnesium citrate so I'm happy to just take 1.

The half price offer doesn't come up often but it's worth registering for their emails to take advantage of whatever they're offering. I think I also had a free bottle of Vit C that time which they offer from time to time.

Henbud profile image
Henbud in reply to SeasideSusie

Many thanks. Much appreciated. Catch up with you soon. 🙂

radd profile image
radd in reply to SeasideSusie

SsS,

‘They're not on my list of brands to use.’

Can I ask who compiles this list please?

SeasideSusie profile image
SeasideSusieAdministrator in reply to radd

Can I ask who compiles this list please?

It's my own personal preferences.

Henbud profile image
Henbud in reply to SeasideSusie

Hi there. Can I just ask whether I should take the vitamin D3(Doctor's Best softgels) at the exact same time as the vitamin K2mk7 (Vegavero capsules) or should I take each one at a separate point in the day? On another point - I have started to take the vitamin B12 (Nature's Choice) liquid(sublingual) daily. I'm not entirely sure how much to take. I'm currently taking half of the pipette (which I think works out at 1ml). There's nothing on the pipette to indicate exact measurement. However,if I'm reading the instruction on the bottle correctly, the suggestion is 13 x drops(which equates(I think) to half of the pipette. I'm hoping that I've got this right! Presuming that I am following the dosage instructions correctly, would you suggest staying with this dosage regime or increasing the dosage to perhaps the full pipette? Hope this all makes sense. Look forward to hearing from you.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Henbud

henbud

Can I just ask whether I should take the vitamin D3(Doctor's Best softgels) at the exact same time as the vitamin K2mk7 (Vegavero capsules) or should I take each one at a separate point in the day?

I mentioned in my reply above :

Don't take D3 and K2 at the same time unless both are oil based supplements, they both are fat soluble vitamins which require their own fat to be absorbed otherwise they will compete for the fat.

The D3 softgels contain fat in the form of extra virgin olive oil. The Vegavero K2-mk7 are capsules and they contain no fat so need to be taken at a separate time of day.

As for the B12, I have not used this. They say serving size is 13 drops which is 3,000mcg B12. Usually 1,000mcg is enough. However much you want to take I would just put some in the pipette, squeeze bulb slowly and count the drops as they fall into your mouth.

Henbud profile image
Henbud in reply to SeasideSusie

Thank you so much for your swift reply. I apologise - you had already mentioned the need to separate the two pills. My brain fog gets concerning at times! Thanks also for the advice regarding the sublingual B12.

I purchased the book that you referred to in one of your previous posts - "Could it Be B12" by Pacholok/Stuart........what an excellent publication. This is so well written and informative! Thank you for mentioning it. 🙂

Henbud profile image
Henbud in reply to SeasideSusie

Hi there, I was just wanting your advice on a couple of things. You mentioned that my iron levels appeared to be on the low side. I absolutely agree. I have a telephone appointment booked with one of the GPs at my practice. I intend raising this concern with him. How do you feel I should address the matter? According to the blood results( that I've already provided you with ) my ferritin is within the 'normal 'range. Nevertheless it is very much at the lower end of the reference range. Would you be inclined to emphasise this point and ask that he prescribe a course of iron pills to dramatically increase the reading? I'm not entirely sure as to how I should best approach it.

On another note, you asked me if I had symptoms of B12 deficiency. Having read through the list I would say I have several symptoms . The balance/light-headed issue being the most debilitating. You mentioned that I should ask my GP for testing for B12 deficiency and pernicious anaemia. Given the blood results in my earlier post, would I be correct in saying that testing for both B12 deficiency and pernicious anaemia have already been done - or is there some other type of blood test/investigation I should be asking for?

I hope this all makes sense!

Look forward to hearing from you.

As always....many thanks. 👍

SeasideSusie profile image
SeasideSusieAdministrator in reply to Henbud

Henbud

You mentioned that my iron levels appeared to be on the low side. I absolutely agree. I have a telephone appointment booked with one of the GPs at my practice. I intend raising this concern with him. How do you feel I should address the matter? According to the blood results( that I've already provided you with ) my ferritin is within the 'normal 'range. Nevertheless it is very much at the lower end of the reference range. Would you be inclined to emphasise this point and ask that he prescribe a course of iron pills to dramatically increase the reading? I'm not entirely sure as to how I should best approach it.

I think your GP wont be worried about your levels. As far as they are concerned your results are within range and that's all they wil be bothered about. The fact that they are not "optimal" will be of no concern (in my opinion), they tend to have no concept of "optimal" and just consider that anything in range is "normal". You can use the information I've given you above to state your case to see if it will help.

Self supplementing with iron isn't recommended because you will need to do regular iron panel tests and keep a very close eye on your levels. You may get your iron and saturation up and your ferritin may remain low. It can take a long time to raise iron and ferritin levels.

You can help raise your ferritin level (and it might improve your iron and saturation levels too) by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet

bda.uk.com/resource/iron-ri...

everydayhealth.com/pictures...

You mentioned that I should ask my GP for testing for B12 deficiency and pernicious anaemia. Given the blood results in my earlier post, would I be correct in saying that testing for both B12 deficiency and pernicious anaemia have already been done - or is there some other type of blood test/investigation I should be asking for?

You could pop over to the Pernicious Anaemia forum here on HealthUnlocked for more tailored information - if you do then list all your symptoms.

Symptoms should take priority over test results where B12 deficiency is concerned.

As far as I am aware the other tests you need doing are MMA (methylmalonic acid) and homocysteine, they will be able to give you more information on the PA forum:

healthunlocked.com/pasoc

Henbud profile image
Henbud in reply to SeasideSusie

Thank you so much. I'll let you know how I get on following my telephone appointment with my GP. I'm feeling,pretty much like you really, that the answer will be "the blood results are within the normal range "............pretty much a frequently spoken phrase by the vast majority of doctors!☹

SlowDragon profile image
SlowDragonAdministrator

previous post from 5 months ago…..you started on 25mcg levothyroxine ….then stopped it

Which brand of levothyroxine was this

Standard starter dose of levothyroxine is 50mcg

Starting on too low a dose causes issues

Levothyroxine doesn’t top up failing thyroid it replaces it

Have you had thyroid antibodies tested for autoimmune thyroid disease? If not get tested

any autoimmune disease in close family?

What vitamin supplements are you currently taking

You say been on 800iu vitamin D for 5-6 years …..that’s too low a dose to improve low levels

Dose vitamin D needs increasing to at least 2000iu, perhaps 3000iu daily and retest again in 2-3 months

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But , improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7. 

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease 

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Henbud profile image
Henbud in reply to SlowDragon

Hi there,

Thank you so much for your message. The Levothyroxine brand that I was taking was Teva. To the best of my knowledge I don't believe that my thyroid antibodies have been tested -only TSH - if this was out of range then the lab would sometimes do the T3 and T4. There is a strong presence of thyroid problems within my family - both my parents had hypothyroidism, one of my brothers has hypothyroidism and several of my aunts,cousins, nieces and nephews have hypothyroidism. I am currently taking the Vitamin D (800 units) which I now understand needs to be addressed. The only other vitamin supplement I have been taking is a standard Superdrug own brand A-Z multivitamin ( 1xdaily).

Best wishes.🙂

SlowDragon profile image
SlowDragonAdministrator in reply to Henbud

So you almost certainly will find you have high thyroid antibodies

strongly recommend getting full thyroid test including thyroid antibodies

I read you had AF …..so starting slowly

AF can be triggered by LOW thyroid hormones…..as well as high

Standard starter dose of levothyroxine is 50mcg ….so starting on 25mcg everyday would be reasonably cautious

Teva brand levothyroxine upsets many people

Suggest you try different brand

Bloods should be retested 6-8 weeks after each dose increase

Likely to eventually be on at least 100mcg levothyroxine per day…..

Levothyroxine doesn’t “top up “ failing thyroid…..it replaces it

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

SlowDragon profile image
SlowDragonAdministrator in reply to Henbud

multivitamins are never recommended for anyone with thyroid issues

Most contain iodine not recommended for anyone with autoimmune thyroid disease

Suggest you concentrate on improving low vitamin D

And 10-14 days after start a separate B12 supplement

10-14 days after this …..add a separate Vitamin B complex

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and separate B12

Low B12 symptoms 

b12deficiency.info/signs-an...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

Low ferritin

Working on improving low iron levels too by increasing iron rich foods in diet

Henbud profile image
Henbud in reply to SlowDragon

Thank you once again. I've ordered the vitamin supplements etc. today. I'll continue to update in the near future. Hopefully I'll start to feel better soon. Best wishes.🙂

SlowDragon profile image
SlowDragonAdministrator in reply to Henbud

only add one supplement at a time

And wait 10-14 days to assess before adding another

Suggest you start with B12

Henbud profile image
Henbud in reply to SlowDragon

I will do. Many thanks.🙂

Hi

I really sympathise, I'm struggling with balance issues myself, they just started one day 5 months ago. Its possible you have a problem with your inner ears or vestibular system. I'm seeing the ENT people soon as they have expertise in this area. Sadly goes with being hypothyroid.

Has your doctor run any tests, have they suggested brain MRI to rule out anything like MS or tumours. There are lots of reasons for balance issues, can be due to low blood pressure, high blood pressure, heart, inner ear, neck related. Can be a side effect of certain drugs. Literally dozens of reasons.

Henbud profile image
Henbud in reply to Sparklingsunshine

Hi there, I did have an MRI scan of the brain about 8 weeks ago. Thankfully this appears to be normal. 🙂

Sparklingsunshine profile image
Sparklingsunshine in reply to Henbud

Hi

Thats good as its ruled out the nasties like stroke, tumours, MS etc. I think mine is either vestibular migraine or a problem with my ears. I've been experiencing popping and cracking and I'm able to sometimes hear my own voice in my ear. Might be related to Eustachian Tube Dysfunction. Are your ears ok as balance issues often originate in the ears.

Hi

I've had so many tests done, bloods for everything. I was checked for BPPV, where crystals can build up in the ears. This can be diagnosed by Epley manouuvre. Could be chronic fatigue. Have you any history of migraine, ringing in the ears, tinnitus, hearing loss? Were you anxious or depressed, was there a trigger like an ear infection or head injury? Was the balance loss gradual or sudden?

In my case I get migraines, had one the day before my balance issues started. Interestingly have only had one since it started, its like the continuous off balance has taken over from the headache. I could have something called chronic vestibular migraine.

There is also a conditon called PPPD, persistent perceptual postural dizziness, sufferers describe fatigue, thick headedness, weakness, feeling like the floor is a trampoline or the ground is spongy. A rocking, swaying sensation. Its worse when standing or moving, better when lying down or sitting. Might be worth googling it. It could also be a result of your hypothyroid as being undermedicated can interfere with balance.

Henbud profile image
Henbud in reply to Sparklingsunshine

Hi there,

Thank you for your reply. It would appear that there could be so many possible causes for these feeling faint/balance issues. My heart goes out to you....I know how debilitating it is. I only seem to get any respite from it when I am in a lying position. Once I am in an upright position the problems start. It makes you feel like you are going to go crazy! Hopefully with all the support/extensive knowledge of so many on this forum I will get some positive result. Once again, many thanks. Best wishes. 🙂

jrbarnes profile image
jrbarnes

So many causes. Could be blood pressure, hypothyroidism and even low iron.

Henbud profile image
Henbud in reply to jrbarnes

Hi there,

Thanks for your message. You're right - there could be so many causes. I'm just hoping and praying that I can get to the root of this issue and improve my quality of life. Best wishes. 🙂

jrbarnes profile image
jrbarnes in reply to Henbud

I'd get your GP to check your blood pressure and heart. Since I have hypothyroidism my GP always checked for heart abnormalities with an electrocardiogram. When my BP is higher I feel so weak and dizzy. I've had times where I thought I was going to pass out on a walk. I've almost fallen over in the bathtub when I close my eyes. When I started taking iron pills I didn't have that dizziness/vertigo anymore. Also, if my thyroid hormone is low I can barely walk I'm so fatigued and weak and get so dizzy. Your GP should really do a workup on your heart, Blood pressure, and anything cardiovascular as well as blood sugar related. These are usually standard tests. Take care

Henbud profile image
Henbud in reply to jrbarnes

Thank you very much for your message. Much appreciated. My blood pressure is something I monitor regularly at home. There doesn't appear to be any problems in that area. I was, just a few weeks ago, fitted with a 2 week heart monitor. Obviously this will provide the cardiologist with a continuous reading of my heart rhythm. I am still waiting on the results of this investigation. I will keep you posted when I am in receipt of the results.

My heart goes out to you. The dizziness/weakness/ feeling as though you're about to faint really is debilitating. It makes your life so difficult. It also greatly affects your confidence.

I send you every best wish and sincerely hope things get better for you. Take good care of yourself.

Best wishes.🙂

jrbarnes profile image
jrbarnes in reply to Henbud

Good thing you and your GP are already on it! That monitor should pick up on anything abnormal. I don't suffer from the dizziness/vertigo, waking with heart racing and sweating anymore. The iron supplements corrected that, thankfully. Keep us updated. Best wishes to you.

HighlandMo profile image
HighlandMo

Adrenal issues can cause balance problems and often go with (and should be treated before) thyroid problems. This might be worth researching

Henbud profile image
Henbud in reply to HighlandMo

Hi there,

Thank you for your message. I was reading online that that adrenal insufficiency can create a variety of problems. I intend looking in to this further. Best wishes.🙂

Brightness14 profile image
Brightness14

I have the same symptoms as you but my Thyroid is not the problem. Mine is caused by a Cholesteatoma which grows in the ear and presses on the balance nerve, it also causes fatigue too. Acousic Neuroma can cause the same symptoms. Have you ever had bad ears or sinus problems.

Henbud profile image
Henbud in reply to Brightness14

Hi there,

Thank you for your message. I've never had any problem with my sinuses in the past and I don't experience any spinning sensation. I have an appointment with my GP tomorrow morning. I'm going to ask if he would be willing to refer me to an ENT specialist to rule out any possible issues in this area. Best wishes.🙂

LynneG profile image
LynneG

You have received excellent answers. I would just comment that I use Nature's Answer vit D liquid drops . 2000 iu per drop so easily can obtain thousands of iu's without taking lots of capsules. The bottle states 4000 on the label but that's per serving which is 2 drops. If you are ill/ have a condition then your immune system uses up available vit D. Recommended by functional doctors that you get your vit D level up to 150 mmol/L as quickly as possible (cancer often state 190 mmol/L perhaps more.) I often take 10,000 iu per day and I know a clinician who ups her intake to 25,000 iu for a few days if feels a cold coming on

Must also take vit K2. Vitamin K2 is crucial to trigger the enzyme that escorts calcium to where it should go - mainly the skeleton and teeth . K2 is a fat soluble vitamin. Most people are deficient in because of the last 50 years of low fat diet recommendations. If K2 is deficient and the enzyme not triggered then Calcium travels it's easiest path to soft tissue which includes the muscles and arteries. The heart is a muscle! Calcium harden. No one wants hardening of the arteries and heart. Don't bother mentioning vitamin K2 to your GP - it was only discovered as separate to K1 in the 1990's - GP's/mainstream have not caught up yet. As K2 is so essential that I take separately as liquid drops that can mostly absorb through the mouth tissue. I take Vitabay Organic vitamin K2 mk 7. liquid drops with dropper.

If you have a possible heart issue it is essential to take magnesium (calcium hardens/ magnesium relaxes). I once listened to a podcast about research re the brain and magnesium. MagEnhance by intelligent labs was recommended re the forms of magnesium. Recommended 3 capsules about half houe before bed. Start slowly , take 1 and build up to 3 re bowel tolerance. Contains: Magnesium Glycinate, Magnesium L- Threonate, Magnesium Taurate.

Also if you are concerned about your heart, heart issues then you will feel so much better if you read British GP's, Heart Specialism/Researcher's book - The Clot Thickens

Never worry about cholesterol levels ! We need a high level of cholesterol . Your brain certainly needs. My husband read research yesterday that the huge, rapid projectory line of alzheimers disease climbs in perfect alignment with statin taking!

Lastly a neurologist in the NHS Hallamshire Hospital Sheffield works alongside a gastroenterologist - Professor Hadjvassilou and Professor David Sanders re the damage gluten causes. to any organ including the brain, heart, gastrointestinal tract. Professor Hadjvassilou works with specifically Ataxia patients (unable to walk in a straight line). So I would recommend removing gluten and all grains from your diet as I have done.

Hope there's something here that helps. Cheers Lynne

Henbud profile image
Henbud in reply to LynneG

Hi Lynne,

Thank you so much for your reply. I really appreciate you giving me this advice. Best wishes.🙂

LynneG profile image
LynneG in reply to Henbud

Forgot to say , Consultant Professor David Sanders wrote his book a few years ago, still selling on Amazon. Gluten Attack.

I haven't read as I have so much info about Gluten. But I certainly recommend it with him being an NHS Consultant (so will I presume carry weight with any GP should you wish to mention facts you learn from ) And obviously him working in conjunction with the Neurologist re removing gluten from the diet re brain issues /ataxia.

Dr Tom O'Bryan (foremost expert on Gluten in the world ) see his you tube videos. His website is : thedoctor.com which also has videos to watch and tons of info. His father he states died of a heart attack at too young an age with no history of heart issues. At post mortem it was discovered the cause was a deficiency of vitamin B12. which had not been known in his med history as never tested. This set Dr Tom O'Bryan off on his path to study nutrition and health issues as in med school nutrition was not considered relevant at all.

I also strongly recommend reading Dr Malcolm Kendrick's book The Clot Thickens , he has a realy sarcastic humorous style which is easy to read. He explains what really causes heart disease and also explains what you can do about it. Which is not lowering cholesterol and definitely not taking a statin.

All the best

Henbud profile image
Henbud in reply to LynneG

Thank you. I will certainly follow your advice and do some reading. I do actually take atorvastatin (20mg daily) and have done for many years. My cholesterol levels are considered to be excellent by my GP. I can give you the blood results if it helps? I know that there are questions being raised as to whether statins are wholly beneficial or possibly leading to a myriad of other problems. To be totally honest I'm not sure whether to continue or consider discontinuing this medication. 🤔

Regenallotment profile image
Regenallotment

I hear you, these feelings are very familiar. I’m 48, I’ve followed all the advice from SeasideSusie and SlowDragon and Greygoose and others and am feeling much better. Things that I think caused my symptoms… under medication, 25mcg made me feel worse not better, 50mcg was ok for 4 weeks (initial palpitations subsided) then felt terrible in weeks 5-8 and 75mcg feels much improved. Couple of weeks to go before knowing for sure and re-testing. Vit levels in that time have risen through taking the recommended supplements (vit D for example has gone from 47 iu/l to 75 iu/l on 4000iu per day. I’ve also altered my diet, trialled exclusions and I now know gluten and dairy, maize products, soy alcohol and processed sugar don’t react well. Have had your antibodies tested ? I’d get those done and that might explain some of your results and symptoms. Wishing you all the best with finding your answers. 🦋💚🦋

Henbud profile image
Henbud in reply to Regenallotment

Hi there,

Thanks for your message. I'm really glad that you're feeling better having followed the advice of these knowledgeable people on this forum. I certainly intend doing exactly the same as you. Best wishes. 🙂

SlowDragon profile image
SlowDragonAdministrator

suggest you get TSH, Ft4 and Ft3 plus BOTH thyroid antibodies tested privately via Medichecks or Blue horizon

BH includes a cortisol test

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning, ideally around 9am

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