Struggling: Hi everyone Such a relief to see so... - Thyroid UK

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Struggling

madinwales profile image
54 Replies

Hi everyone

Such a relief to see so many respond. I wonder if you could help me too. I have high levels of antibodies 2 months ago they was at 557 and dr put me on Levothyroxine 50. And for 30 days I felt fantastic but after the thirty days it felt like I hit the wall feeling worse than before, after that first antibody test the dr won't test them anymore only my T4 level which are within normal range (2 blood test) so I decided because I feel so bad and hairs naff skins naff, I decided to have test privately and got the results twi days ago antibodies at 600. What can I do I'm struggling emotionally, I'm so up and down I can't cope, I have a few other autoimmune diseases and I'm feeling this is the final straw, I'm normally very positive but I'm struggling to get out of this funk. My dr doesn't think I need to see an endocrinologist what do you think? Should I book somewhere privately? And if so where do I go and how do I find a good one near me? Thank you I'd appreciate any help x

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Marz profile image
Marz

Hi and Welcone ! Can you post your results with ranges ? Without them as a guide any comments will be a guess ! Did you have the all important vitamins and minerals tested ? B12 - Folate - Ferritib - VitD ?

No point in re-testing anti-bodies as they fluctuate ...

What other meds are you taking and which supplements ?

madinwales profile image
madinwales in reply to Marz

Thank you for responding Marz xx

T4 89, T3 4.0, Free thyroxine 17.5, Thyroid peroxidase ab's 600.10 up from (557 2 months ago)

I also suffer with ulcerated colitis , Rheumatoid , Psoriatic arthritis and Psoriasis. A fib/ Heart and liver disease , Ménière’s disease and if that didn’t depress me enough I’ve Just developed vitiligo??? Which my dad and brother suffer with...

I take beta blockers , Sulfasalazine , steroids when needed, serc-16, levothyroxine 50.

It seems that they cannot stop my body attacking itself. Which is why according to doctor Wentz the high antibodies plays a big role. Shows they thyroid is already attacking itself , Hashimoto disease.

I would appreciate any help, I’ve only had thyroid issues diagnosed in last 6 month. I have suspected a problem (emotional highs and very lows, hair falling out, very cold, dry skin, sleeping 12-15 hrs a day! No life and no desire for one either) but when the dr tested T4 & T3 normal range I assumed it was the other health issues. Then finally dr tested antibodies and they was 557 and once on levo for 30 days I was wow is this how I use to feel, Fantastic!! 30 days later it was like I hit a wall, woke up with same if not worse issues, now I’ve been suffering for a few months blood test from dr would only do T4, so finally hubby so worried we had them done private as you see above antibodies increase again which makes me understand why I feel worse. Will an endocrinologist help me??? Should my dr send me to one??

SlowDragon profile image
SlowDragonAdministrator in reply to madinwales

Please add the ranges (figures in brackets after each result)

Every lab has different ranges

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

You will see thousands of posts on here about gluten intolerance

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Most of us forced to get full Thyroid and vitamin testing privately. Often need to see a recommended thyroid specialist endocrinologist if GP is obtuse and refusing to increase Levothyroxine dose

Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists

thyroiduk.org.uk/tuk/About_...

I had vitiligo and psoriasis...now all cleared up

SlowDragon profile image
SlowDragonAdministrator in reply to madinwales

Mernier's disease ....this could actually be low B12 causing dizziness

Extremely common to have low B12 with Hashimoto's

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,

Low vitamin D is extremely common too

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

Have you had vitamins tested?

madinwales profile image
madinwales in reply to SlowDragon

🙏 thank you.

So would it be good just to start taking those vit with out dr doing levels? If so what is a good brand that absorbs easy into body? And what level should I take?

SlowDragon profile image
SlowDragonAdministrator in reply to madinwales

No you should test FIRST

if B12 is very low you need full testing for Pernicious Anaemia before starting on any B vitamins

Same applies to vitamin D. If it's very low you will need high loading dose prescribed by GP

Local CCG guidelines

clinox.info/clinical-suppor...

See GP and request vitamin levels are tested....take your husband along for moral support

SlowDragon profile image
SlowDragonAdministrator in reply to madinwales

If GP is unhelpful and won't test vitamins then getting full Thyroid and vitamin testing privately via Medichecks or Blue Horizon is next step

Making sure to get blood test as early as possible in morning and before eating or drinking anything other than water and last dose Levothyroxine 24 hours prior to blood test

Batty1 profile image
Batty1 in reply to SlowDragon

This is very true. When my Meinere acts up I pop a Lipo flavonoid plus capsules and within a few hours it relaxes.

madinwales profile image
madinwales in reply to Batty1

I've never heard of those, does it work and does it stop the ringing?

Batty1 profile image
Batty1 in reply to madinwales

Amazon might have them ...I wouldn’t call them a miracle but they do help me with ringing and hearing.

I was desperate for relief, took them a few day when I first started them but now I can take one or 2 capsules as needed and in a few hours everything lessens.

madinwales profile image
madinwales in reply to Batty1

im driven crazy sometimes with ringing, I will definitely see! Thank you x

Batty1 profile image
Batty1 in reply to madinwales

Their is no cure for meineres disease and sadly the ringing won’t go away and I can attest to this I actually lost hearing in my left ear although I can’t hear a thing the ringing (tinnitus) never stops “It’s my annoying buddy” I learnt long time ago to ignore him. I’m more bothered by complete silence when my good ear goes dead anywhere from a day to a month.

I have a caption phone ! Life saver

madinwales profile image
madinwales in reply to Batty1

Bless you, I'm not quite at that stage yet. Are u learning to sign? Sounds like it may be needed eventually. I do have to sleep with background noise (usually bible reading for me) otherwise I'm driven a little mad with ringing. I do try to ignore it through the day and I can really but at night it's impossible!!!

Batty1 profile image
Batty1 in reply to madinwales

I guess my 25 yrs of meineres disease taught me to eventually ignore the ringing and no I don't know sign language (read lips really well) but I can still hear out of my right ear and have only 40% hearing left in it ....hearing aides are useless with the fluctuations I get and the deafness that happens are very random (attacks) I can go 3-4 months without issue and Bam I'm deaf.

madinwales profile image
madinwales in reply to Batty1

I’m glad it’s not completely gone. Just out of interest have you ever had a balance test? My test showed pressure in right ear 30% less than left. To be quite honest I’m wondering whether mine is AIED and not meineres?? Only because of all the other autoimmune diseases I have

SlowDragon profile image
SlowDragonAdministrator in reply to madinwales

Looks like Your GP should be regularly testing Folate and B12

From Wikipedia

"Sulfasalazine inhibits dihydropteroate synthase, and can cause folate deficiency and megaloblastic anemia.[11][12][13] and various other undesirable effects.[14]

Sulfasalazine can cause hemolytic anemia in people with G6PD deficiency.[15]

Sulfasalazine may cause stomach upset, nausea, vomiting, loss of appetite, headache, dizziness, or unusual tiredness. Skin and urine can become orange, with occasional allergic reactions.[16]"

Which beta blocker do you take?

Batty1 profile image
Batty1 in reply to madinwales

Geeze, I think we are related! Just kidding. I have psoriasis and Psoriatic Arthritis, meineres disease, IBS-C and hypothyroidism (thyroidless, cancer).

madinwales profile image
madinwales in reply to Batty1

With a name like batty maybe we are 😝 lol I know you must struggle too. What a great forum this is because you really do realise your not the only one struggling and with us all together there is nothing we can’t get to the bottom of our health issues with each other’s help....after such great response to my question yesterday I feel much more positive (without even seeing dr yet) that I don’t have to just rely on his knowledge or lack of knowledge depending on me having a good or bad day., THANK YOU EVERYONE.......(I probably in tears tomorrow) lol.

SlowDragon profile image
SlowDragonAdministrator

50mcg Levothyroxine is only a starter dose

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

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

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you add your most recent blood test results and ranges members can advise on next steps

Likely you need 25mcg dose increase in Levothyroxine and bloods retested 6-8 weeks later

greygoose profile image
greygoose

Your doctor didn't put you on levo because of your high antibodies, he put you on it because you either had high TSH or low FT4. In other words, you are hypo. The antibodies are just the proof that your hypo is caused by autoimmune disease: Hashimoto's Thyroiditis - aka in the UK Autoimmune Thyroiditis.

The antibodies themselves are of no consequence, and neither levo nor anything else will get rid of them. It doesn't matter that they've gone up, they will go down again because they fluctuate. As Marz says, no real point in retesting them.

Taking levo for a few weeks and feeling better, then feeling the symptoms return, is perfectly normal. It merely means that you need an increase in your dose of levo. Whether your doctor understands that or not, depends on his level of education in thyroid - most GPs have very little. But, giving us your TSH and FT4 - any any other results from the private test - will help us advise you. Seeing an endo can actually be a very bad idea, because they don't usually know much about it, either. Depends on the endo, but we're pretty much on our own, I'm afraid.

But, if you want your GP to increase your dose, it's the TSH/FT4 - possibly FT3 - results you want to base your argument on. Not the antibodies. :)

madinwales profile image
madinwales

Thank you grey goose. I feel so confused with it all and tearful. So if my levels are all normal(except antibodies) why would my dr increase my levo? He says if he increases it it could put my into hyperthyroidism?? But if he doesn’t do something I feel I can’t go on like this...

SlowDragon profile image
SlowDragonAdministrator in reply to madinwales

Do you have the actual results and ranges?

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.

In reality many GP surgeries 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.

Most GP's don't understand that once we are on low we need dose increased slowly until FT4 is in top third of range and FT3 at least half way through range

If you add your results members can advise on next steps

If vitamins are low these can cause symptoms in their own right and getting optimal helps Thyroid hormones work better too

greygoose profile image
greygoose in reply to madinwales

Sorry, didn't see this before because you did not click on the blue 'Reply' button under my comment, to alert me. :)

I can't comment on your levels because I haven't seen them with ranges. And, what you gave above, without ranges, looked to be a TT4 and an FT3. TT4 is pretty useless for our purposes, we need the FT4. But, if you did them privately, the FT4 must have been tested. So, if you put your results on, with the ranges, I'll have a better idea what we're talking about. But, believe me, your doctor will not have increased your dose without a good reason! They hate increasing doses. However, he doesn't know much about thyroid, if he thinks increasing it again can make you go 'hyper'. lol That is a physical impossibility. You could become over-medicated, but that is rather doubtful. And, not a tragedy if you are!

So, post your results/ranges, and we can have a more meaningful conversation. But, don't forget to click on the blue 'Reply' button. :)

madinwales profile image
madinwales in reply to greygoose

Thank you and sorry

I'm useless at computer things!

My level

T4. 89. nmol /L. 59 - 154

T3. 4.0. pmol/L. 3.1. - 6.8

TSH. 3.24 mIU. 0.27. - 4.2

Free thyroxine.

17.5. pmol/L. 12.0 - 22.0

Antibodies.

>600.10. IU/ml. 0. - 34

😊 thank you

madinwales profile image
madinwales

Thank you SlowDragon, it’s a struggle to try and get your dr to listen to how I’m feeling, he just nods and smiles and I’m sobbing and then I walk out with no answers and my poor family dealing with a rollercoaster mum again.. he hasn’t suggested any vitamins or checked any levels.

It’s funny after reading Dr Isabella Wentz it seemed like she hit the nail on the head, with how I feel and how the antibodies plays a part even with normal levels of T4 and T3.?? But if I’m understanding everyone here that doesn’t play any part??

I don’t understand (my brain isn’t doing great lately) why I’m feeling so crap and my levels are all in normal range set out by NHS. That was why I thought endocrinologist might be more educated than GP and help me..

greygoose profile image
greygoose in reply to madinwales

The first thing you have to understand is that doctors know next to nothing about thyroid. In all their years in med school, they only have one afternoon on the whole endocrine system - so you can imagine how little time they spend on the actual thyroid! And, they don't spend any time at all on nutrients, so not surprising your GP doesn't think about testing them - and probably wouldn't understand the results if he did.

And, the really unfortunate part is that all this goes for endos, too! They are not better educated in thyroid than GPs. Their name would suggest that they know all about the whole system. But, they have very, very limited knowledge of any of it. They are basically diabetes specialist, but from what I've heard, they don't know much about that, either!

So, we have to do our own tests, learn to interpret the results and what to do about them. And, that's where we come in. The collective knowledge on this forum far out-strips any endo you might see.

Second thing you have to understand is that blood tests are just that: they only tell you what's in the blood, not what's being done with it. It's perfectly possible to have a result in-range and still feel like the proverbial. But, you can't just take one result out of context and say: that's good so I should be fine. We have to consider them all together and compare them. Also, they are a faulty system because of the way the ranges are arrived at - too complicated to go into detail, you'll have to trust me on that one. So, we have to interpret them with a generous pinch of salt, something that doctors are not capable of doing because they don't know enough about it, where thyroid is concerned. Which is why we always ask for results and ranges, all together.

Isabella Wentz I would take with a large pinch of salt, too. She makes it all sound so easy, but… Antibodies are pretty complicated, and I won't go into too much detail at the moment, but there's no proof that the actual antibodies cause symptoms. They are really just an indication that you have the disease, they are not the disease. You can just as easily have Hashi's without ever having raised antibodies, and still feel like you-know-what. It is the low FT3 that causes symptoms - plus low nutrients. T3 is the active hormone and you need to have enough of it FOR YOU. We are all different and all have different needs. And, even if you have decent levels of FT3 in the blood, there remains the question: is it getting into the cells? Doctors just don't understand any of all that.

madinwales profile image
madinwales in reply to greygoose

Excellent and simple thank you.

I think when I’m poorly and they have dr before their name and assume they know what they are saying. And because my test came back normal except antibodies and yet I feel awful I assumed it was because of antibodies, and dr put me on levo because of antibodies I’m assuming so 2 plus 2 in my mind meant antibodies bad and feeling low antibodies?? If this makes sense.....so thank you for clarifying

greygoose profile image
greygoose in reply to madinwales

Yes, they think they know it all, but they actually know very, very little. But, there's no such thing as 'normal'. When a doctor says 'normal', he just means 'in-range'. And, just being anywhere in the range is not necessarily good. Your result needs to be in the right place in the range FOR YOU. And, doctors just can't get their heads around that concept.

madinwales profile image
madinwales in reply to greygoose

If he refuses again to increase dose, I did beg a month ago, would it be sensible to get thyro gold or some other over counter thyroid med I can buy?

greygoose profile image
greygoose in reply to madinwales

There is no other OTC thyroid med you can buy. In the UK, all thyroid hormone medications are prescription-only. Anything else you might buy that claims to 'support' the thyroid, or whatever, are snake-oil multi-vits, which usually contain iodine, which is something you really do not want to take as it could make things 100 times worse.

Thyro-gold come from the US, doesn't it? Very expensive. But, let's cross that bridge when we come to it. :)

madinwales profile image
madinwales

A big thank you everyone. I’m sorry if I sound disheartened.

My level

T4 89. nmol /L. 59 - 154

T3. 4.0. pmol/L. 3.1. - 6.8

TSH. 3.24 mIU. 0.27. - 4.2

Free thyroxine. 17.5. pmol/L. 12.0 - 22.0

Antibodies. >600.10. IU/ml. 0. - 34

SlowDragon profile image
SlowDragonAdministrator in reply to madinwales

So these results show you are poor converter and in need of dose increase in Levothyroxine

FT4 is 55% through range

FT3 only 25% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Getting vitamins tested and supplement to bring to optimal levels will help improve conversion

You could start taking selenium supplements now. May help improve conversion of FT4 to FT3

Daily vitamin C may help too

Strictly gluten free diet helps thousands of us

Again ideally getting coeliac blood test first (as medical fraternity view coeliac disease more significant than gluten intolerance...even though it isn't)

madinwales profile image
madinwales in reply to SlowDragon

😢😢thank you😢 I will go and get those test done, I went out and bought just fruit and veg yesterday because I do eat a lot of gluten products and read from dr Wentz gluten plays a big part, I have a friend with celiac disease I am not like her but I’m going to get it tested. I am going online right now to see what test company are there so I don’t have to worry about seeing my dr...

thank you so much 😊 xxx

SlowDragon profile image
SlowDragonAdministrator in reply to madinwales

You might be able to get cheaper if you look around ..eg Amazon

...but here's one

healthcheckshop.co.uk/store...

SlowDragon profile image
SlowDragonAdministrator in reply to madinwales

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.

In reality many GP surgeries 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.

Important to see exactly what GP has tested and equally important what hasn't been tested yet

Optimal vitamin levels when on Levothyroxine

Vitamin D at least around 80nmol and around 100nmol may be better

Folate at least over ten

B12 near top of range and at least over 500

Ferritin at least half way in range

If you get hold of test results from before you started on Levothyroxine.....if FT3 was tested...you may see it might have now dropped a bit.

When we start to become hypothyroid your thyroid has to work hard ....over compensates...making FT3 at all costs. Once we start on Levothyroxine, your thyroid stops trying so hard, takes a rest....and frequently FT4 and FT3 can drop.....until dose of Levothyroxine is increased

Dose Levothyroxine is stepped up slowly as our metabolism slowly picks up

Wetsuiter profile image
Wetsuiter in reply to madinwales

no wonder you feel crap. with those results.

madinwales profile image
madinwales in reply to Wetsuiter

Really I do wetsuiter....because the dr says normal

(other than antibodies)

I'm feeling like I'm losing plot! x

Wetsuiter profile image
Wetsuiter in reply to madinwales

you re not. your Dr is wrong.

greygoose profile image
greygoose in reply to madinwales

ah! The results!

OK, well, for a start, your TSH is much too high for someone on thyroid hormone replacement. Yes, it's in-range, but I explained about the ranges above. And, when you're on thyroid hormone replacement (levo) hypos usually need their TSH down around 1 or under - or even under-range. And, the most important thing to remember is that an under-range TSH doesn't mean you are hyper or over-medicated, whatever your doctor says, it doesn't mean much at all because it's not a thyroid hormone, it's a pituitary hormone.

So, having a TSH that high it's understandable that your actual thyroid hormones - T4 and T3 - are too low. Your pituitary is telling you that. And, until your pituitary says 'ok, that's good' and reduces the output of TSH to 1 or below, we can't really tell how well you convert, because you don't have enough to convert. So, we'll leave that aside for the moment.

So, what you need to do next is convince your doctor that, even though your results are all in-range, you really do need an increase in dose because a TSH of over 3 is not normal for anyone. In fact, a TSH of over 3 is hypo. Get another increase of 25 mcg, and that should bring your TSH down to around 1, and increase your FT4 level. You have plenty of room for an increase, there. It's only just over mid-range. It won't go over-range on an increase of just 25 mcg. Then, get retested in six weeks time, and we can talk about it again. :)

madinwales profile image
madinwales in reply to greygoose

Thank you for taking your time to explain and maybe this will make more sense to you, the dr told me something about my pituitary glad, and he said I have hypo but more like graves?? I only found four cases documented since 1970’s and I understood none of it lol.

greygoose profile image
greygoose in reply to madinwales

Makes no sense what so ever. The pituitary is nothing to do with Grave's. Grave's is an autoimmune disease. Unless he meant that Hashi's is an autoimmune disease like Grave's.

The pituitary is nothing to do with autoimmune diseases. The pituitary produces TSH - Thyroid Stimulating Hormone - among many other hormones. When the pituitary senses that there is not enough thyroid hormone in the blood, it produces more TSH to stimulate the thyroid to make more hormone. When the thyroid cannot respond, the TSH rises. That is what is called Primary hypo.

Primary hypo can have many causes. Your primary hypo has been caused by the autoimmune disease, Hashimoto's Thyroiditis, where the immune system slowly attacks and destroys the thyroid.

If hypothyroidism is caused by failure of the pituitary, it is calle Secondary hypo. That is characterised by having low FT4/3 but also low TSH. What was your TSH when you were diagnosed? It's too high now, so I would imagine it was even higher when you were diagnosed.

But I'd be curious to see the cases you found, because I don't understand what sort of cases they would be! lol

madinwales profile image
madinwales in reply to greygoose

Not sure what he meant but I’ve cut and pasted som of it hear

Four patients with hypothyroid Graves' disease.

Starrenburg-Razenberg AJ1, Castro Cabezas M, Gan IM, Njo TL, Rietveld AP, Elte JW.

Author information

1

Department of Internal Medicine and Endocrinology, Sint Franciscus Gasthuis, Rotterdam, the Netherlands. arazenberg@hotmail.com

Abstract

In autoimmune hypothyroidism (Hashimoto's disease), TPO (thyroid peroxidase) antibodies may be detected, while in autoimmune hyperthyroidism (Graves' disease) thyroid-stimulating hormone (TSH ) receptor antibodies (TSH -R-AB s) are frequently present. Less well known is the fact that autoimmune hypothyroidism can present with TSH-R-ABs and ophthalmic Graves' disease (OGD). This condition is also known as hypothyroid Graves' disease. In this report we describe four patients with this uncommon phenomenon. These four cases demonstrate that differences between Hashimoto and Graves' disease are less clear than expected. Hypothetically the thyroid cell might be 'attacked' by blocking and stimulating antibodies. Dependent on the relative concentrations, hypothyroidism or hyperthyroidism may occur. So the differences between Hashimoto's disease and Graves' disease, at least in these cases, may be gradual and small.

greygoose profile image
greygoose in reply to madinwales

OK, I see. But, no, I don't think that's what he meant. He didn't test for Grave's, did he? GPs can't test for Grave's, it has to be an endo. So, he can't say you have Grave's and Hashi's. I think he's just very cack-handed at explaining things - so many of them are - and he just meant to say that Hashi's is an autoimmune disease, like Grave's (also autoimmune) but whereas with Grave's you're hyper, with Hashi's you are basically hypo. That's all. Don't worry about it. :)

madinwales profile image
madinwales in reply to greygoose

He just said he was testing thyroid and it’s probably the way I’m saying too. When The very first test came back I said is it Hashimoto he said no more like hypo graves?? But like you said it doesn’t matter just getting sorted is more important. Your right the OTC thyroid med was iodine but someone on here had said about thyrogold is made from cows thyroid?? That’s all I know lol

OK I will definitely try to get dr to up levo another 25... thanks again for all your help 💐

greygoose profile image
greygoose in reply to madinwales

Yes, well, most GPs' idea of 'testing thyroid' is TSH only, FT4 and/or antibodies, if you're lucky. He won't have tested for Grave's. As I said, GPs aren't allowed to test for Grave's. The lab wouldn't do the test even if he ordered it. So, he's talking out of the top of his hat.

OTC thyroid support does not contain hormone, anyway, so it wouldn't help you in any way. Thyrogold is cow thyroid, I know, but it's not sold in the UK. It would have to come from the US, I think, which makes it expensive. There are cheaper ways. But, try and get that increase in levo, first. :)

madinwales profile image
madinwales in reply to greygoose

Honestly makes me not believe GP at all lol

To be quite honest I don't know how happy I'd be to take cow thyroid?? But my Hubby is from USA, so family would send if need be! But like you say let's see if GP increases dose!

Thank you so much greygoose (my favourite vodka) lol you really have been so helpful and I feel mentally better just being on here talking to great folks like you... and knowing I'm not going crazy! Thank you x

greygoose profile image
greygoose in reply to madinwales

No, you're not going crazy. :)

Taking cow thyroid is no worse than taking pig thyroid. And, if you eat meat, it's no worse than taking a thyroid pill. Worth a try, if you can establish a continual supply. But, cheaper to get levo on the NHS. Certainly until you've got your TSH down a bit and can see how well you convert. That's always good to know.

madinwales profile image
madinwales in reply to greygoose

Just did some research and not as reliable as pharmaceutical drug. They were saying because unregulated in some pills you may get some active ingredient and in other pills not enough or none!! So a lot of research needs to be done. I can see over there that as prescriptions are expensive to fill there if no insurance, it would be worth trying this. But fortunately we do have NHS

Thanks again

greygoose profile image
greygoose in reply to madinwales

NDT is unregulated? Absolute nonsense, Big Pharma propaganda. There have been far fewer recalls with NDT than with synthetic T4. It's as well regulated as any other form of thyroid hormone replacement, so just ignore all that. Many, many people on this forum do very well on various brands of NDT, including Thyrogold. :)

madinwales profile image
madinwales

Sorry I thought I’d left a bigger gap between numbers??

SlowDragon profile image
SlowDragonAdministrator in reply to madinwales

It's the app - you can spend ages writing it up nicely...then it comes up on here all mixed up and nice spacing all gone

You can edit your posts (see down arrow next to "more" on bottom right of each reply )

fuchsia-pink profile image
fuchsia-pink

Further to SlowDragon's comment on testing (and my own post a couple of days ago) my GP is agreeing to test for everything SlowDragon recommends - yippee - except she says I can't get Vit D unless I've already been taking supplements for at least 3 months (although she's said she'll try, and if not, we'll just get them done later). I don't know if this is a "local" thing or a general principle. So you won't necessarily have to pay ...

I'm actually quite excited as this was a different GP at the group practice - who seems a lot more interested in getting me sorted!

Can you see someone else at your local GP if the current one isn't supportive?

And suggest you google the endo consultants at your local hospital to see if anyone seems more thyroid-y and less diabetic-y [so many seem really just to be diabetics specialists] - and get the endo list from Dionne [tukadmin@thyroiduk.org] as well.

SlowDragon profile image
SlowDragonAdministrator in reply to fuchsia-pink

If they refuse to do vitamin D you can get tested via NHS postal kit £29

vitamindtest.org.uk

madinwales profile image
madinwales

So I got back from GP and he has increased my levo, from 50 to 100. Originally he was going to increase it to 75 then during me saying ive been to see him at least 3 x in 3 months complaining of symptoms especially feeling so low and a feeling of something in throat i then had a complete meltdown sob sob...that he should be adjusting med on symptoms more so than maybe levels with Hashimoto sob sob....he decided to increase it 100 yikes I’ve been on new dose for 2 days now and woke this morning less tired even after doing a lot yesterday, I was just wondering whether doubling dose is ok as I have a funny feeling in tummy, nothing major just a weeny bit antsy, could this just be body adjusting? Thx.

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