Thyroid UK
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GP says thyroid results normal

TSH 4.66 (0.2 - 4.2)

FT4 14.9 (12 - 22)

FT3 3.3 (3.1 - 6.8)

Your thoughts please, I take 100mcg levothyroxine. Thankyou

77 Replies
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You are undermedicated and need an increase in your dose of Levo.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges if that is where you feel well.

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Ok thankyou, endo does not agree my symptoms are hypothyroid, please see list below

tinnitus

pins and needles

tiredness

hard stool

puffy eyes

eyebrow loss

feeling cold

depression

memory loss

heavy periods

dry skin

dry eyes

hair loss

weight gain

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Some of your symptoms are indicative of low nutrient levels. You need the following tested:

Vit D

B12

Folate

Ferritin

And if Ferritin is low:

Iron panel

Full blood count

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I supplement can I post them please?

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It doesn't matter whether your symptoms are due to thyroid or not. Most of them are, but some could be low nutrients. The point is, the blood tests speak for themselves. You are hypo because your TSH is too high and your FT3 much too low. Whatever is the matter with these stupid endos! Seems like any excuse is good enough not to increase a dose!

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Thankyou I have multiple deficiencies and I supplement for them as well, I want to introduce more but no idea if what I have bought is enough

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I would suggest that your write a new post giving :

* nutrient levels at last test

* exactly what you're taking - not leaving anything out

* exactly how much you're taking of each.

Then people will be able to advise you.

But, you still need an increase in levo! :)

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Ok will do this now thankyou, also have out of range antibodies whatever they are

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Yes, I saw that, below. They mean you have Hashimoto's thyroiditis - aka Autoimmune thyroiditis - aka Hashi's. Lots to read about Hashi's on here, but basically, what it means is that your immune system is slowly destroying your thyroid. And after each attack, extra hormone leaks into your blood stream, which is why your levels go up and down.

There is no cure for Hashi's. But, you could try going 100% gluten free, and taking selenium, to lower the antibodies. :)

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Thankyou I didn't know what they meant, endo didn't explain to me

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I don't suppose he knows!

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No he ran his cursor straight past the results for antibodies and didn't say anything, then he goes and shouts at me for overdosing on medication :( was hoping he would understand

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None of them do. We see the problem time and time again. So, next time he shouts at you, shout back 'I've got Hashi's, you moron!' :D

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I was with one doctor who was more knowledgeable than the endo, he said I seem to have autoimmune thyroid disease (he didn't say Hashis) and that my thyroid levels needed to be in the top parts of their ranges. But he was the only one out of more than a dozen GPs that really knew anything more than this "endo".

He also said if he had authorisation to prescribe me T3 he would

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He sounds like a dream come true!

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Yes he was, very much so. I had to leave the practice though since I was moving cities. Was gutted. :( He even diagnosed my mum with Cushings and hypothyroidism as well.

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Shame you couldn't take him with you!

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I second that :D

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How dare he shout at you! Absolutely I’d be shouting back... nothing worse than a endo with a god complex who doesn’t know what they’re doing!

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Yes I am sure he does have a god complex. He comes across as quite arrogant and a bully

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I would tell him that and ask to see someone else. I think that’s outrageous personally plus he hasn’t got a clue what he’s talking about

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I plan to ask my GP today to see a different endo. This one doesn't want to see me for another year and my levels aren't stable at all. I get the impression either he's given up on me or leaving me to get worse. Not sure what it is I've done to deserve this to be fair :(

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He’s just clueless, it’s not about you; it’s entirely about him. Not seeing you for a year is ridiculous.i think its for the best that you see someone else, keep us posted x

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Absolutely will keep you guys posted. This mistreatment has gone on long enough and I want to get well again

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Exactly! Good luck x

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Thanks x

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Just got off the phone to the GP surgery this morning - have explained to the receptionist that my endo is leaving me unstable with a TSH above range and no change in dose for 11 months and my vit D is below 75 and ferritin below 50. I have been offered a phone appointment and I plan to show them I mean business

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Good stuff.... we have all had to battle at various times so you are not alone

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Can you record your GP telephone appointment?

Make sure you write down what you want to say in advance and have it in front of you during the telephone call......

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Good! Don't give up and be prepared for them to fob you off all the time, refusing to give you the treatment you need. Show them you will not accept their negligence any longer. Good luck.

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Rowerj

You should have put him back in his place by telling him you are not used to being shouted at and you would like an apology, and that you did not want to see him ever again. These people really need to be brought down and understand we patients will not put up with their incompetence, arrogance and delusion of grandeur.

Unfortunately it is not just the endos who are useless... Have seen 2 haematologists and neither of them was able to explain why I had an elevated number of red blood cells and one told me they do not pay attention to low iron level.... mine went down to 3 (range between 8.8 to 27).... so very low, yet she was useless. In truth they are not that intelligent.... and they do not deserve our respect nor trust.

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Next time you visit an endo' (or any doc') take someone with you that they won't dare shout in front of!

Suggest elderly relation or large rugby playing friend!

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Two links which may be helpful:

thyroiduk.org/tuk/about_the...

thyroiduk.org/tuk/about_the...

The proper name for Hashi's is - An Autoimmune Thyroid Disease. Treatment is the same as for hypo.

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I haven't left anything out on my supplements post but I do get brain fog and if I forget to do some things I apologise

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Don't worry. Someone will ask the question! lol

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True. I just don't like making more work for people than necessary and when I do I end up feeling bad about it :( I feel like a nuisance coming here and posting but I do want to get well

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No, you're not a nuisance. Don't worry about it. People are happy to help. :)

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Thanks :) is it ok to just come on here and chat? I have been having trouble managing my symptoms while at work and I have been getting very stressed out lately. Just seems to take forever to feel well but I do want to put the effort in. I don't think the stress is helping it much either!

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People do come here to chat about how they are coping as well as receive support to understand their results. You could make another post so that people can focus on your results and interpretation in this one, but get the support you need for the struggle these conditions represent. We all struggle to manage and people have always responded here with understanding and care. People know what it is like to live with thyroid conditions.

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Ok thankyou. I feel very alone with this illness. I find it very isolating and partner and family don't seem to understand

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Had the same problem - work doesn’t understand, mother doesn’t understand (keeps trying to make me diet), ex partner didn’t understand- current one is much better. I think this forum is a blessing for people like us tbh and don’t feel bad, that’s just your thyroid talking.

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And no idea why would my results fluctuate from 2 months ago with a TSH of 0.03 (0.2 - 4.2) and FT4 25.6 (12 - 22)

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Have you had thyroid antibodies tested? If so were they raised? Raised antibodies confirm autoimmune thyroiditis aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. Very likely this is the cause.

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I was told they were out of range?

Thyroid peroxidase antibodies 778 (<34)

Thyroglobulin antibodies 1200 (<115)

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The numbers fluctuate because as the antibodies attack your thyroid bits of it die and dump stores of thyroxine it was holding making you have periods of overactivity (low TSH numbers) but it soon reverts back to not making enough thyroxine and you become hypothyroid again with larger TSH numbers as this is telling your thyroid to make more thyroxine because your body senses you do not have enough of it to function properly. Hope that makes sense .

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Flowerj,

GP is wrong. TSH is over range and FT4 and FT3 are low in range so you are undermedicated.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP when you ask for a dose increase. If GP refuses again change your GP.

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i just got the pulse leaflet and i read on there that t3 should be about 1.7pmol---- i am confused- mine is 3. something-----and he says there is no place for animal thyroid hormone in hypothyroid- so i suppose we shouldnt be using naturethroid or armour?

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Lots of us would be extremely poorly without it! I would dislike your comment but It's like or nothing!

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i take it as well

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Bluepettals2,

It depends on the lab range used. 1.7 would be considerably below my range which is 3.5 - 6.5.

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bluepettals2 theres a place for it in my life! I didn’t have a life worth living on T4 I had a living hell.

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bluepettals2

The Pulse article appears to be talking about total T3 not free T3 and as Clutter has said, it depends on the range. I imagine your level of 3. something is free T3 with a range something like 3.1-6.8 (Blue Horizon and Medichecks) or 3.5-6.5 like Clutter's.

From Pulse article:

"This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

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doesnt look normal to me and considering endo's dont know much, i cant see a general practitioner understanding one iota of endo hormones- they probably have never heard of reverse t3, or antibodies, liver conversion of t4 to t3 or that t4 is inactive until it converts to t3, that low fats-- can interefere and not synethise hormones - the list goes on, i like dr john bergman, dr alex haskell, dr mercola, dr Lam, google around , go onto netdoctor- it is run by a bunch of doctors one of them i have seen- he is on the adrenal page dr shern chew, find out as much as possible and see what can be done. there are so many hormones, vit d as well in the mix - gps just gawp on tsh and know not much else. p.s it might be a good idea to also make some brone broth- the gut bacteria has a lot to answer for in health. a metabolic or functional medicne doctor would be on that straight away.

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Thankyou vit D has been checked, I am going to ask GP today to be seen by haematology again since the consultant there wanted my vit D over 75. It is just over 60

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a correctly treated hypothyroid patients TSH should be 1.0 or below

Their freet4 should be around 19

Free t3 should be around 5.5

You are clearly very undertreated

Have

Ferritin

Folate

B12

Vitd3

Been tested because all 4 must be halfway in their ranges for the v

t4 in levo to be converted into the truly vital t3 needed by every cell in the body to function

All this can be verified in google scholar searches if only your GP would read them

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Theres a survey on tpauk that a final year dtudent is doing for a dissertation on how hypothyroid patients are treated ...go fill it in

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When I saw the summary of your post, I assumed you were trying to get a diagnosis in the first place! Your numbers are bad enough that a person should be able to get diagnosed with them. Which is crazy when you're supposed to be getting treatment.

Your TSH is actually out of range! What does your doctor expect!

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I know and the endo will only arrange phone appointments with me and refuses to increase my dose.

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i just got the pulse leaflet and i read on there that t3 should be about 1.7pmol---- i am confused- mine is 3. something-----and he says there is no place for animal thyroid hormone in hypothyroid- so i suppose we shouldnt be using naturethroid or armour?

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Dr Toft has had a few ups and downs. He's said a lot of very unhelpful things, but recently he's come good and said a few very helpful things.

He's not someone to learn from and to base your treatment on. He's someone to use strategically to make arguments to doctors. Because he's high status. I can't remember off the top of my head, but he was the director of the school of physicians or something like that. My mind's gone blank! Useful to have that info at your fingertips if taking it in to a doctor.

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SilverAvocado professor of Endocrinology and head of the College of Physicians I think but will check and adjust if wrong - good to say exactly who he is to GP!

Oops not quite - this from the horses mouth

President of the Royal College of Physicians of Edinburgh, President of the British Thyroid Association and between 1996 and 2009, Physician to Her Majesty the Queen in Scotland. No mention of being a prof just Consultant Physician with an interest in Endocrinology and thyroid disorders

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Thanks TSH110!

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huh! yeah, normal when you're not suffering from the under medicated thyroid!! D'you know what? Another 25 mcg daily would do you a treat. If the GP won't prescribe then get them yourself, plenty of links on thyroid uk. Or PM me and I'll point you in right direction! Get better soon and restore your energy. Are you straight forward underaction thyroid gland or Hashimoto's disease?

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Hashimotos

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Hashi2014, sorry to correct you, but Hashimotos is a straightforward underactive thyroid. The vast majority of people with underactive thyroid have Hashimotos. Well over 90%, although doctors often don't tell people they have Hashimotos.

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There's nothing!!!! straightforward about Hashimotos. I'm a nurse and a Hashi sufferer. So re-educate yourself in this area! An underactive thyroid is a clinical symptom that can be easily corrected. Hashimoto's is a disease!

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I'm sorry Hashi2014, most doctors and endocrinologists know very little about thyroids and the treatment of underactive thyroids, so being a nurse doesn't mean very much in this forum :p

If a person has a sustained underactive thyroid that requires treatment they will most likely have Hashimotos disease. A much smaller number of people have central ( also called secondary) hypothyroid, which is the pituitary gland failing to produce TSH (thyroid stimulating hormone). This is the hormone that calls a thyroid into action, so if you don't have it a perfectly healthy thyroid won't produce enough thyroid hormone. A very small number of people are unable to find the cause of their hypothyroid. After 4 years on the forum I am aware on 1 case of this, and perhaps that members family.

And then there are people like me, who have had a thyroidectomy or RAI (radioactive iodine treatment to destroyythyroid cells).

If you want to know far more about underactive thyroids than you will have learned in your training, stick around and read the forum for a few months! :)

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you give me a good laugh anyway!! I've been a hashi for over thirty years and know quite a lot as a sufferer ... let alone my nursing and counselling experience and I've been with thyroid uk from the start!! over and out!

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SilverAvacado,

I thought that was a very rude comment, telling Hashi2014 that because she is a nurse her opinion doesn’t count here!

Everyone, whoever or whatever they are, counts.

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Apologies Ellie-Louise, I was intending to say that her views count just as much as anyone elses, regardless of whether she's a nurse.

I thought she was trying to say that because she was a nurse her information was more valid!

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Accepted, thank you.

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sorry flowerj just read down a bit and see you are Hashi, therefore need a bit more levo to start with to keep everything under control and antibodies in check. been there done that and got a lot of t shirts!! xx

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Dear Flowerj,

I personally would say you need at least 25 mcg - 50 mcg more to supplement your T4 and T3 ranges. They are on the low side of the ranges, I bet that would then bring your TSH levels down and hopefully raise your T4 and T3. But unfortunately I am not medically trained ha ha!

Why is it we seem to know more than the "Professionals" lol?? - baffles me, it really does.

Also I do believe if you are having heavy periods etc, you are anaemic and likely to be deficient in B12 also and likely vitamin D. The loss of eyebrows is another indication that your under medicated as well.

When we are anaemic, we bleed heavily as our blood is thin and puts strain on our heart hence the reason we feel the cold which is circulation problems too. Also would make sense of some of the tiredness as well.

Have you got any odema - puffiness in your feet/ankles?

I would seek a second opinion definitely.

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Thankyou I have posted vitamin and mineral results in another thread, no puffiness in ankles but my legs are becoming very prone to circulation problems

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Do let us know how you get on! Intrigued!

Plus what everyone else has said.

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According to the doctor it was estimated that I have had hypothyroidism since i was around 16.. I was 31 when i was finally tested and put on synthroid.. Then changed to levithroxine... My weight and health went up and down for years... Last year i found amd all natural supplement made from beef ground in New Zealand...Thyrovanz i have dropped 20 pounds.. And my health is alot better.. If your interested... Thyrovanz.com

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You're in the difficult position of having a rubbish Endo :( You're just banging your head against a brick wall, and it doesn't help you too much to know what the right treatment is, you probably already know you need an increase.

The first thing to try is to shop around with doctors. You may find a GP who will give you an increase. Many GPs operate on the TSH alone, so a lot will acknowledge there's a problem that yours is over range. Also, some doctors know it needs to be a bit lower, in the 1 or 2 range.

If you can't find a better doctor, you'll need to consider self medication. This forum is a good place to start.

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