Confused about what I've actually got? Please help

[TinaBa]

Got these results back but not sure if I have Graves or Hashimotos? Do I still have hypothyroidism? So confused if somebody could help I would be really greatful.

[tattybogle]

We would need more information about your thyroid results, TSH , fT4 and fT3 and history, plus a TRab test to answer your question. Raised TPOab (thyroid peroxidase antibodies) indicate in increased likelyhood of eventually becoming hypothyroid due to autoimmune hypothyroidism( either Hashimoto's or Ord's), but they are ALSO found in a percentage of Graves patients.

The diagnostic test for Graves is raised TRab (thyroid stimulating hormone receptor antibodies) this test is usually only ordered by endocrinology dept, not GP's.

[TinaBa in reply to tattybogle]

Sorry that's all I can find. I was diagnosed with Hypothyroidism 15 yrs ago and been on Thyroxine ever since. Doctor said no further action. Thanks for your help.

[Lora7again]

Your TSH would be suppressed and your T4 and T3 would be very high for example my TSH was 0.002. I also have very high antibodies which can happen in both diseases. Some of the symptoms are very similar in both but mine were a very high heart rate, sweating, extreme hair loss, nails lifting off nail beds and I lost a lot of weight. I would also go days without sleeping but this was because I had been left untreated for over 2 years.

[TinaBa in reply to Lora7again]

I haven't got any of these symptoms now apart from severe pins and needles in legs and pain, cramps and pain underneath foot. I get an erratic heartbeat occasionally but nowhere near as bad as before I was diagnosed I ended up in hospital. I had severe panic attacks and slept and ate all day eventually losing my business over it. A few months ago my hair was falling out,nails were bad, depressed and struggling just to get through day to day. Thanks for trying to help 🙂

[humanbean in reply to TinaBa]

I haven't got any of these symptoms now apart from severe pins and needles in legs and pain, cramps and pain underneath foot.

This could be caused by low vitamin B12. In order for the body to make use of vitamin B12 people also need adequate folate, so a shortage of that can also cause problems.

Another possibility is that low levels of thyroid hormones are causing a problem called plantar fasciitis :

en.wikipedia.org/wiki/Plant...

Low nutrients and plantar fasciitis are incredibly common in people with thyroid disease.

I get an erratic heartbeat occasionally

This could be caused by low iron and/or low ferritin (iron stores).

I had severe panic attacks

Personal anecdote : I didn't get panic attacks but I did have problems with anxiety and depression. These problems disappeared when I optimised my ferritin levels.

You really need to know more about your levels of thyroid hormones and your basic nutrients. Without information improving your health is like trying to navigate through a maze you've never seen before in the pitch dark.

[TinaBa in reply to humanbean]

You've hit the nail on the head about the maze! I do try but the doctor just says everything comes back normal hence why I had a private one done. I'm 51 and going through menopause so that is just another thing on to of everything else to deal with!

[humanbean in reply to TinaBa]

In the UK you are legally entitled to one or both of the following :

1) Access to your GP medical records online - there are several levels of access, and most helpful is getting access to all current data and also historical data too.

2) You can also ask for copies of blood test results and reference ranges on paper. Insist that they are printed out from your medical records on computer. Getting them scribbled on a piece of paper isn't any good - there is far too big a risk of mistakes being made.

3) When asking for any of the above always speak to the receptionists, never the doctors. There is no need to involve a doctor - and in fact they may get annoyed about being asked. You will need proof of identity and probably proof of address too.

To learn more about your legal rights of access to your records, see posts by this member - she is the forum guru on the subject :

healthunlocked.com/user/djr1

Another link which is useful is this one :

ico.org.uk/your-data-matter...

The above link is mostly of use to people wanting access to and copies of large amounts of information, for example, copies of their entire GP record. For just getting results from one set of blood tests it shouldn't be necessary to write a letter - but some surgeries put road blocks in the way of patients getting information from their records, so be prepared for anything.

[SlowDragon Administrator]

Your profile says you are hypothyroid

Presumably on levothyroxine

How much levothyroxine are you currently taking

Do you always get same brand

What vitamin supplements are you currently taking

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Please add thyroid and vitamin results

[pennyannie]

Hello TinaBa and welcome to the forum :

Do you have the rest of this blood test report, showing other blood tests and ranges ?

I would think more likely to be Hashimoto's Disease as you can experience " hyper like symptoms " which are transient, and when this phase is over you can experience further, additional, hypothyroid symptoms and need an increase in medication to compensate for the erratic, falling production, from your own thyroid gland.

The blood tests are just a snapshot in time and don't necessarily correlate with how you feel when these " hyper phases " happen.

Are you taking any thyroid hormone medication ?

Does that sound like what you experience ?

If you were with Graves Disease you need positive and over range TSI (generally referred to as a stimulating ) or a TR ab ( generally referred to as a blocking ) antibody test and medicated with anti thyroid drugs to block your own thyroid hormone production and if on too much AT drug you could have symptoms of hypothyroidism.

Can you share a little more information with us so that we can help you further with your dilemma.

[TinaBa in reply to pennyannie]

Thank you for your help I don't even know what a Trab is. It's all very confusing I've added all I've got below.

[pennyannie in reply to TinaBa]

Good morning to you :

As I mentioned above TR ab and TSI are the two antibodies unique to Graves Disease ;

If you were told you had Graves Disease you would see a blood test referring to one or both of these antibodies and giving numbers over range as being the medical evidence of the disease.

You can arrange your own test through one of the private blood test companies if you wish BUT I think you have Hashimoto's which confuses some people as you can experience " hyper phases " but then become more hypo and need more medication to offset the thyroid glands erratic lowering production as it dies from Hashimoto's Disease.

Yes, thank you for adding everything you had but think I was looking at 2 different sets of blood test results and incomplete numbers and ranges.

I do not understand the screen shots added, and from what I can see, they say nothing fully enough to make any sense of anything BUT I am not a doctor just someone living with lingering Graves Disease, thyroid eye disease and hypothyroidism and talking from my experience reading on here, and sorting my own health issues out.

It is as confusing as it is frustrating but as you read up on your health condition it does all fit together and you will be better placed and more confident to talk and question your doctor / endocrinologist as to your treatment options.

[TinaBa in reply to pennyannie]

Thank you pennyannie I haven't been told anything just no further action necessary. If it is Hashimotos is the treatment any different? I always try and help myself with eating a good diet and absolutely no alcohol as it messes me up for about 5 days 😭 it's very frustrating I agree. Sorry to hear about your experiences.

[pennyannie in reply to TinaBa]

No worries :

Well, the NHS do not know how to control the AI component of thyroid disease so after diagnosis, you're pretty much on your own dealing with it as best as you can.

The treatment is the same T4 - Levothyroxine and as the gland's production of hormones diminishes you will become progressively more hypothyroid and needing additional medication.

However if you still experience these " swings " and your doctor only looks at your TSH it may look like you are over medicated as the TSH is not the appropriate blood test when with an thyroid AI condition.

You need to be dosed and monitored of both T3 and T4 blood test results with a view to get both these vital hormones into balance and the upper quadrant of the ranges.

You will need to read up on Hashimoto's as I read that many people have stomach issues and with gluten and other food stuff intolerances. This will prepare your body best to extract key nutrients from your food for core strength but you may still to supplement ferritin, folate, B12 and vitamin D to assist in the conversion of T4 into T3 : again I read doctors are not taught vitamins and minerals and have little knowledge of the implications of same when hypothyroid and with a slow metabolism.

A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3 = trace elements of T1. T2, and calcitonin. The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

Just being " somewhere in the NHS range " doesn't give you back your " you " -

though from most doctor's perspective being in the range somewhere, anywhere, means " ok and good to go ".

It is a fine balance between your T3 and T4 and takes time, knowledge and skill - and in fact, only you can really know by how well you feel at any given time :

Of course there will be some specialists and endocrinologists who specialise in AI thyroid conditions and Thyroid uk the charity who support this amazing forum hold a list of recommended - through forum members - people to go to, if you have the means and ability.

Read up, join Thyroid uk, as there's much to read on the website, and you can do much of this yourself once with a little knowledge and understanding of how it all fits together.

[TinaBa]

Thanks everyone for the reply I really appreciate your help and expertise.Free Thyroxine 17.7 pmol/l

I'm on 100mcg Thyroxine have been for years now. Different brands I normally get. I'm on Vitamin D 5000mcg a day and b complex.

Results

[pennyannie in reply to TinaBa]

Hey there :

I sound greedy but do you have any more results there ??

Your T3 is barely in the range and your T4 is 17 - what is the range for T4 and do you have the actual results and ranges of the vitamins and minerals as these levels can compromise the thyroid hormone conversion.

You can type it all in if easier, but we need to see the full results and ranges so to offer you a complete explanation :

[TinaBa]

No further action necessary but borderline

Colour

[TinaBa]

Abnormal but no further action

Colour

[TinaBa]

TSH

Colour

[tattybogle in reply to TinaBa]

TSH 1.99 [0.3-5.6] ?..... This picture is from a different blood test to the one discussed above with ;

TSH 1.51 [0.27-4.2]

fT3 3.64 [3.1-6.8]

fT4 17.7 [ ?-? ] what range please? we need this to see if 17.7 is high or low in range.

[TinaBa]

??

Colour

[TinaBa]

Sorry it's not great picture. Legs are very tingly and feel heavy. Overall feeling not bad. Thanks again for your help.

[pennyannie in reply to TinaBa]

Hey there again :

Well I can't understand these screen shots and so shall go back to the beginning :

T4 - Levothyroxine is a storage hormone that needs to be converted by the body into T3 the active hormone that the body runs on which is said to be about 4 times more powerful than T4 with the average person using about 50 T3 daily, just to function.

The accepted conversion ratio when on Levothyroxine only is 1 / 3.50 - 4.50 - T3 / T4 : with most people preferring to be at 4 or under.

So if we divide your T3 into your T4 we get 4.90 which shows poor conversion.

It is T3 that causes the symptoms - too low a T3 and you have hypothyroidism and too high a T3 and you have hyperthyroidism.

Currently your T3 is around 5% through the range and this is very low and you must be feeling very uncomfortable.

With a T4 at 17.7 and no range I can only guess that this is about 57% through the range and ideally T3 and T4 need to be balanced in the ranges with most people preferring to be up and around / over 75 % through both ranges.

Your TSH is quite high and seeing as you have over range antibodies you may well feel better with a lower TSH which will happen with a dose increase, or two, in Levothyroxine which in turn should increase you T3 :

Conversion ca be compromised by many things including low ferritin, folate, B12 and vitamin D so these will be an area to have tested and possibly supplemented to optimal levels.

Just being somewhere within the NHS range doesn't work when hypothyroid as we need all levels to be optimal, to make up for our body's shortfall in metabolism.

Conversion may also be compromised by ageing, dieting, depression, inflammation, and any physiological stress ( physical or emotional ) and possibly other medications you may take.

Your antibodies are high with one set showing over range so you possibly have Hashimoto's auto immune thyroid disease. I read many people with this disease need to look at mending their gut and cutting out various foods from theirs diet so to calm down their immune system thereby limiting the number and severity of " hyper " episodes as the thyroid gland becomes more disabled and the patient becoming more hypothyroid.

Do you recognise the hyper / hypo symptoms I detailed previously - has your doctor / endocrinologist diagnosed Hashimoto's AI Disease ?

There are more details on the Thyroid uk website on all things thyroid and auto immune and many people refer to the writings of Dr Isabella Wentz who has Hashimoto's Disease herself.

[TinaBa in reply to pennyannie]

Thank you for your help and knowledge. I've added all I've got below.

[Jasminepink]

You are hyperthyroid

[helvella Administrator Thyroid UK in reply to Jasminepink]

Why do you think that?

[tattybogle in reply to Jasminepink]

screenshot TSH 1.99 [0.3-5.6] ..... from a different blood test to the one discussed above with ;

TSH 1.51 [0.27-4.2]

fT3 3.64 [3.1-6.8]

fT4 17.7 [ ?-? ]

TPOab 101[>34]

Taking 100mcg Levothyroxine for many years.

Jasminepink, these results show no indication at all of HypErthyroid, (and no indication of overmedication either.)

They seem to indicate an Autoimmune Hypothyroidism patient who is being treated with Levothyroxine, a TSH comfortably within range, a fairly low in range fT3, and an fT4 that we cannot say where it is in range , because we don't have the range.

Hyperthyroid results would have fT4 /3 significantly over range, and TSH significantly below range.

Did you mean to write HypOthyroid ?

Could you clarify your comment , as TinaBa was already confused , and writing "you are hyperthyroid " without any further reasoning will likely confuse her further.

[ling in reply to tattybogle]

Is the TPO at 101 significant?

Thank you

[tattybogle in reply to ling]

TPOab 101 [>34] is significant , as it's raised above the reference range of 34. This confirms the cause of hypothyroidism to be autoimmune.

* TPOab can also be found in some people with Graves Hyperthyroidism diagnosed by TRab, but Graves doesn't seem to be the diagnosis here.

[ling in reply to tattybogle]

Thank you.

Is autoimmune hypothyroidism Hashimoto's?

[tattybogle in reply to ling]

Hashimoto's disease is one variant of Autoimmune Hypothyroidism, it is characterised by a goitre, there is another presentation of autoimmune Hypo that does not have a goitre, this is called Ord's disease. Probably just as common as Hashimoto's, but rarely get's a mention.healthunlocked.com/thyroidu...

Most UK Doctors would not use the term 'Hashimoto's', They prefer 'Autoimmune Hypothyroidism' , if they bother to use anything at all..... often they just use 'Hypothyroid ' without any reference to the cause, since the treatment doesn't differ , whatever the cause.

[ling in reply to tattybogle]

Thank you very much.

There is non autoimmune hypothyroidism?

[tattybogle in reply to ling]

yes, Hypothyroidism can be congenital, or caused by radiation , or drugs, or caused by trauma, or caused by infection , for example see this on De Quervain's thyroiditis :

ncbi.nlm.nih.gov/books/NBK5...

Also Post Partum thyroiditis , if it resolves naturally, is only temporary. However i'm not certain about the presence or not of antibodies in relation to Post Partum,.

The whole area of classification of thyroid disorders , and their causes , suffers from the same lack of interest as optimal treatment does, so a lot of what's written is rather vague.

[ling in reply to tattybogle]

Thank you very much! An invaluable lesson : )

[pennyannie in reply to Jasminepink]

Good morning to you :

Glad to see you have started your own post :