Thyroid UK
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Help me – desperate for advice. Feel so uncared for by endo :(

Please can someone advise. I am so unhappy and I feel that my endo has just stopped caring about me. I was diagnosed hypothyroid in 2011, levothyroxine wasn't started until 2013 because my TSH wasn't regarded high enough until then.

I increased in March 2018.

I am also aiming to be pregnant. My current symptoms are mainly intolerance to heat, constipation, cramps in muscles, eczema, new and worsening allergies, tiredness, ears ringing more frequently and I have been getting very high blood pressure.

I called my endo secretary on 5 July to ask about what my endo thought about my bloods or a possible change in brand. The secretary said she'll let the endo know and he'll make a decision. I have still not heard back from him and I feel so uncared for and like he's given up on me.

I am literally crying as I write this because I feel like I am making something out of nothing but all I want is to feel well again. I am 31 years old, I shouldn't be obsessing over my health like this.

Thankyou

JUL-2018

TSH 2.62 (0.2 – 4.2 MIU/L)

FT4 15.6 (12 - 22 PMOL/L)

FT3 3.4 (3.1 - 6.8 PMOL/L)

Before that

TSH 4.26 (0.2 - 4.2 MIU/L)

FT4 17.1 (12 - 22 PMOL/L)

FT3 3.3 (3.1 - 6.8 PMOL/L)

THYROID PEROXIDASE ANTIBODY 204 (0 - 34 IU/ML)

THYROGLOBULIN ANTIBODY 485.3 (0 - 115 IU/ML NEGATIVE)

FERRITIN 22 (30 - 400 NG/L)

FOLATE 3.8 (4.6 - 18.7 NG/L)

VITAMIN B12 217 (190 - 900 PG/L)

VITAMIN D 34.4 (25 - 50 NMOL/L VITAMIN D DEFICIENCY. SUPPLEMENTATION IS INDICATED)

35 Replies
oldestnewest

So sorry you feel so poorly. I wonder if it would help if you write a letter to your endo including the information in your post above. It must be so frustrating going through his secretary and then getting no response.

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Thankyou I wrote to the NHS regarding the endo but I retracted what I wrote because the endo made me feel uncomfortable and I was worried about him discharging me

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I think it should be helpful for endo to know how you feel. If the information goes through the secretary filter you don’t know what endo knows. Also if it’s in writing endo can’t dispute what you’ve said. It is an important thing that you feel so low. Endo may not realise there is a need to prioritise a response to you. You can get a list of thyroid specialist / friendly endos from Thyroid UK.

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Thankyou I am trying to get referred to an endo in the next county to me. I intend to discuss symptoms and problems with the endo with the GP. I do not intend to be on a starter dose for the rest of my life.

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And also my symptoms are not caused by low thyroid if TSH is in range

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Most Endocrinologists treat diabetes patient and this phrase "ymptoms are not caused by low thyroid if TSH is in range" is untrue. As far as I know the UK has the harshest terms for diagnosing hypo. In other countries if TSH goes above 3 with symptoms people are diagnosed.

In the UK they usually wait till TSH is 10 whilst ignoring disabling symptoms.

We feel best when TSH is 1 or below.

TSH is from the pituitary gland (thyroid stumulating hormone) and it pumps out to try to help the thyroid gland to put out more hormones. That is why it rises and a high TSH is used to diagnose someone who is hypothyroid.

Tick off your clinical symptoms and I am sure you will find anxiety too as well as other symptoms:-

thyroiduk.org.uk/tuk/about_...

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

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

We have to read, learn and ask questions in order to recover our health as few doctors or endocrinologists in these 'modern times' know much more than looking at the TSH and T4. Copy from above:

JUL-2018

TSH 2.62 (0.2 – 4.2 MIU/L) - too high should be 1 or lower

FT4 15.6 (12 - 22 PMOL/L) - low - should be towards the upper part.

FT3 3.4 (3.1 - 6.8 PMOL/L) - bottom of the range and should be nearer 6.

T3 is the only Active thyroid hormone and it is needed in our millions of T3 receptor cells - the heart and brain contain the most.

You are on an insufficient dose of levothyroxine and you should have an increase of 25mcg every six weeks until TSH is one or lower.

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Endo says my problem list is

Primary hypothyroidism

General anxiety disorder

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General Anxiety disorder is a made up disease by doctors who can't be bothered to treat patients physical symptoms. There is no blood test to prove you have it so ask for it to be removed from your records as no endo is qualified to diagnose it (would need to be a shrink)

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Thankyou I have included this in my letter I am hand delivering to the practice tonight in preparation for my medication review on Tuesday next week

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Hi

My Endocrinologist was rubbish too, so your not alone in your opinion.

To really know what’s going on you need to test the following:

TSH, T3 & T4.

If those have not been done and you don’t feel you can ask your Endocrinologist (if he ever returns your call) then do them privately.

Medi checks and blue horizon offer full thyroid testing, also you need to test your vitamin levels as if they are low it will not be helping the situation, test vitamin D, B12, iron and ferritin.

Has the Endocrinologist tested your antibodies, for an autoimmune disease?.

What dosage of Levothyroxine are you on?

Best wishes

Peanut31

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Thankyou so much my TSH is 2.62 (0.2 - 4.2 MIU/L)

Before that TSH 4.26 (0.2 - 4.2 MIU/L)

FT4 17.1 (12 - 22 PMOL/L)

FT3 3.3 (3.1 - 6.8 PMOL/L)

THYROID PEROXIDASE ANTIBODY 204 (0 - 34 IU/ML)

THYROGLOBULIN ANTIBODY 485.3 (0 - 115 IU/ML NEGATIVE)

I am on starter dose 50mcg from 25mcg back in March 2018

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Free t3 is way too low and TSH is too high for a successful pregnancy. Free t4 wouLd need to be much higher to convert to enough t3 (if you are capable of converting)

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Thankyou no I am not capable of converting at all. First endo said so. This endo has not commented

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Added FT4 and FT3 from July 2018 into original post

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50mcg would be alright for some people for this long -but not for you. It isn’t enough for results to be in range, they have to be at the place (hopefully in range) where you feel well. If it is endo that has diagnosed generalised anxiety disorder maybe it would be worth challenging it and explaining that the anxiety has arrived with the hypothyroidism and treatment with Levo (it made me feel anxious too but GP denied there was any effect, I know different). I know it’s hard but sometimes I think there’s more to be gained by sticking your ground with the same medic if you can, then you can always move in future if you have to. How did you get to see this endo?

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Thankyou I don't know how the general anxiety diagnosis came about. 3 weeks after my first appointment with him I saw the diagnosis crop up on letters and it was never there on letters from previous endos or consultants.

I was meant to go to Cardiff and I was referred there by my GP at the time, based in Weston. By the time I was given a date to see the endo in Cardiff I had moved house and cities and my GP in Bristol refused to let me go to Cardiff because she said it would be a waste of a trip.

I was then referred back to Bristol and I was given the current endo without choosing him. I tried seeking a second opinion and the endo wrote back saying he was the second opinion and I wasn't to see anyone else.

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But what was the reason for the referral? They don’t usually refer hypo patients. I think you are entitled to a second opinion on NHS but perhaps hold fire and see with this endo. You don’t have to like him, as long as he makes you well. Sounds as if he wants to treat you? They play silly wotsits at times - I think trying to gauge our cognitive function - we get more assertive as we get better! Unless they’re c***, in which case we somehow have to find some assertiveness from somewhere for the appointment. Wish you all the best, you will get well in the end.

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The reason for referral was because I am planning pregnancy. I just don't understand why my current one isn't getting back to me. I am feeling so ill that I want a raise in dose and I don't know what to do

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So do I increase anyway? I don't know when or why the endo is not getting back to me

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Endo may be encouraging you to lead your treatment so that you will be able to manage it more accurately through pregnancy than endo can. You will be able to do this if you can tune in to the signs and symptoms of your body. Then endo can just back up your judgements with tests.

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And endo wants my TSH at 2.5, FT4 and FT3 at top of ranges. But he gives me a diagnosis of general anxiety? I am confused.

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Well maybe put in your letter that you feel that you have to raise dose now and do it. If you’ve been taking this dose since May and have had a test on this dose, it’s ok to raise by 25mcg.

Ask endo if he’d like to see you in six weeks with test results on new dose. If nothing else you’ll get a reply! Sorry if I sound a bit flippant, but I’ve been doing this for a long time, over 25 years and you have to manage the condition yourself to some extent as well as manage the medics!

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Thankyou I plan to speak to GP tomorrow and tell them I am increasing to 75mcg whether they like it or not. I continue to feel unwell. Endo only wants to speak to me over the phone, no face to face appointments at all.

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My GP is also only available over phone :(

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The endo has no idea .sadly thats par for the course at BRI they are useless ..you do not have anxiety disorder ...you have low T3

Your ferritin is way too low

Its vital that

Ferritin, folate, b12,vitd3 are all at least halfway in their ranges

Hypothyroid causes this trashing of vitamins and the very last thing you should think of right now is pregnancy becis miscarriage will be likely result

You need to sort out the vitamins , raise your dose of levo because correctly treated

TSH will be 1.0 or below

Freet4 and Freet3 both need to be very near top of their ranges

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Welcome to our forum and I am sorry that you are feeling awful.

The fact that you were diagnosed seven years ago and are still struggling says it all. You have been mismanaged. That in itself isn't a surprise as most on this forum have been or undiagnosed.

This is a list of clinical symptoms and your Endo shouldn't separate the symptoms from hypo and make out 'anxiety' is not due to being hypo but is another 'problem'.

What you need is someone who knows how to relieve your symptoms and he isn't the person.

On this forum most have recovered their health with advice/support on here. It is also learning on how to make ourselves well, despite the guidelines laid down that doctors have to follow.

thyroiduk.org.uk/tuk/about_...

I know you will tick off more than one of these symptoms - the aim of which is to relieve with proper dose of thyroid hormones.

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Thankyou I plan to see a good thyroid doctor in Weston Super Mare. I have the letter already printed and will be hand delivering it to the practice tonight in preparation for my medication review on Tuesday next week

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Your vitamin/minerals are woeful and if no-one advises what to do in a short time, copy and paste them onto a new post for answers as they may have been missed.

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THYROID PEROXIDASE ANTIBODY 204 (0 - 34 IU/ML)

THYROGLOBULIN ANTIBODY 485.3 (0 - 115 IU/ML NEGATIVE)

I'm sure someone will correct me if I'm wrong, but doesn't the above mean you have Hashimotos. An autoimmune disorder?

You have the right to request that entries on your medical record be amended if inaccurate or at least annotated with your comments if you disagree with opinions written there.

FERRITIN 22 (30 - 400 NG/L)

FOLATE 3.8 (4.6 - 18.7 NG/L)

VITAMIN B12 217 (190 - 900 PG/L)

VITAMIN D 34.4 (25 - 50 NMOL/L VITAMIN D DEFICIENCY. SUPPLEMENTATION IS INDICATED)

The above results ALL need addressing or further investigation. That collection of results could be making you feel absolutely awful. B12 in particular needs further testing for Pernicious Anaemia (another autoimmune which is why the Hashis is relevant as they often come in clusters). Folate....vital for you...and your baby if you want go become pregrant. Iron is needed by the thyroid and to process b12. Folate is also needed for b12 processing.

Vit D needs to be up around 150 +

But please please ask for further testing for Pernicious Anaemia. Have a read up in the PA group here.

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Thankyou I will x

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Don't let them label you with an anxiety issue. They tried that one on me for years. T4 actually causes anxious feelings if it doesn't suit you. When I switched to T3 only I felt immediate inner calm. I would just increase your dose yourself to see if your other symptoms subside. I know you want a baby but get yourself healthy first. If you did become pregnant the baby will sap what it needs from you. Imagine trying to look after a new baby feeling so unwell. If you are desperate to conceive I suggest going to see a Private Endocrinologist if you can afford it. Your issue will get resolved far sooner without having to fight off labels that don't belong to you. I was fobbed off with a diagnosis of ME & CFS by NHS Endocrinologist. They are a waste of time unless someone on here can recommend a good one. You can ask to be referred anywhere if you are prepared to travel. Remember how you used to feel when you were well. You need to get back to that don't accept anything less. One thing I think is important is to take photos of yourself regularly. My appearance changed drastically over the years. If you Google before and after hypothyroidism treatment you will see what I mean. After all these Endocrinologists don't know you from Adam! I wish you well, don't give up. This desease is so insidious, it takes the fight out of you if you let it. So don't, get someone to go with you to your appointments to back you up. I watched friends get better on Levithyroxine in a matter of weeks but it never did anything for me. Once you've got optimally treated and still have all your symptoms on T4, you will need to try alternative treatments.

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What is being done about your low ferritin folate vit d ?b12? Below 500 for b12 can cause permanent neurological damage, has for me and mine was 310, numbness in finger tips remains even though its been around 1000 for over two years now. Your Gp should be testing for pernicious anaemia before supplementation. All these need dealing with as soon as you can.

TSH in treated hypo patient should be below 1

Ft4 And ft3 nearer top of range in many to feel well.

Honestly love you have a lot to get sorted before trying for a baby, for the babies sake and yours. There is recommended thyroid levels for pregnancy... Do a post asking what they are. Endo sounds arrogant dick... How unusual haha. Link about second opinion nhs.uk/common-health-questi...

I thought second opinion was a legal right but apparently not. Is he a diabetes specialist? Tell your Gp you want referring to a Thyroid specialist, Thyroid UK have a list of patient recommended ones.

And if your Endo doesn't care about his patiant then it says a lot about him, none of it good. Chin up kiddo he's just an temporary (bloody annoying, ignorant, uninformed)obstacle.

((hugs))

Linda x

Hugs

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Thankyou I said to the nurses who the endo was, they said "oh we know him" but the way they said that didn't sound good.

He is a diabetes specialist yes. I am going to be referred to a good thyroid doctor in Weston Super Mare.

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Shaws has summed up my feelings entirely. This endo is wasting your time and actually causing harm.

I recommend listening to University of Cambridge Professor Edward Bullmore talking on Radio 4 about 'The Inflamed Mind' and how it's inflammation due to physical / autoimmune illness that seems to be the root cause of many mental health issues. Obviously your Endo never reads journals and has done diddly squat to further his knowledge on this vastly underfunded illness since leaving Med School.

thyroiduk.org.uk/tuk/thyroi...

Fibrolinda is making a very important point too about B12 deficiency. Going on the PA forum is a good idea. I'd like to add a personal recommendation based on my own arduous pregnancy/miscarriage experiences years ago that I've now found methylated folate to work much better than folic acid as there is a significant minority of people who find it hard to absorb folic acid as there is an enzyme (dihydrofolate reductase) in the liver that's required to convert folic acid to usable folate in the body and many people have an insufficient amount of this enzyme. I wish I'd known about this before my pregnancies because I was ill after both of them with deficiencies.

b12deficiency.info/

wellnessmama.com/12543/foli...

Oh and get in touch with Seaside Susie and the admin team about supplemental iron regime for hypothyroidism and thyroid testing.

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Thankyou I plan to see a better endo in Weston Super Mare.

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