What does a endo do and when would you ask for a referral?
endo : What does a endo do and when would you ask... - Thyroid UK
endo
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megan2017
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SeasideSusieRemembering
Many members have been disappointed with their endo consultation and many endos have made some patients more ill than they were already, me included.
Most endos are diabetes specialists and know little about treating hypothyroidism.
However, that said, there are some good endos out there.
Your GP may refer you but if your test results are in range an endo will possibly refuse to see you.
Before you consider asking for a referral, why not post your results, as previously suggested, for members to try and help. I listed the tests you need here
healthunlocked.com/thyroidu...
You could always post the results you already have, as suggested.
The collective knowledge of experienced patients here is often much more than some doctors know.
I don't doubt that one bit.My GP is rubbish. I have all these symptom and you know what he writes in my Disability assessment form that I had to pay £35 for she has hypo and there is no evidence that her carpal tunnel, chronic back ache , stiffness , fatigue ,brain fog has anything to do with her thyroid. I mean with that in mind what ope do I have. I will try to request my latest one
"I will try to request my latest one"
You are legally entitled to your test results, without charge. Don't ask your GP, just ask at the reception desk for a print out, don't accept verbal or hand written results (mistakes can be made), it needs to be a print out. You don't need to give a reason why you want them, but if you feel you must just say that they are for your own records and leave it at that.
It is a disgrace what he's written.
He's no doctor but someone who just reads information and treats patients without care and concern but Collects his wages.
Tick off the following symptoms you have on the list below. Most GPs looks at the TSH alone and ignores clinical symptoms and especially when needing the correct evidence for the Disability Assessment.
Tell the disability assessment that you are very sorry that the 'evidence' your GP sent to them is very incorrect and in fact that these are the symptoms (tick them) that makes life and living very difficultf or you. Sometimes just because we put on lipstick and comb hair that the 'assumption is' that we don't look as symptomatic as we feel - and they don't understand that the pain which means one finds it difficult to comb hair or brush teeth and quite a lot of other every-day normal actions.
SlowDragonAdministrator
First thing is, do you have any recent blood test results? if not will need to get hold of copies.
How much Levothyroxine are you currently taking?
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer 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.
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 if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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
thyroiduk.org.uk/tuk/testin...
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 antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
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.
Sorry for all the questions, what are the dangers of stopping your levo to get everything tested on a unmedicated body. Why is it that on or off it I don't feel much better I don't see a different.I am very anti meds on take it if I am on my dying bed.
Stopping your meds for a very short time ( a few days) won't make much difference to your health or your results. Stopping them for longer will increase your risk for heart disease, dementia and possibly send you into a coma - depending on how hypo you are. They are not really meds but replacement hormones, there to do the job your body cannot do on its own any more. Your thyroid runs your whole system and without it you die, slowly and painfully.
Yes but levo slow down you metabolism and yet all I get it I need to lose weight I am obese.
No Levo does not slow down your metabolism. It's the LACK of Thyroxine in your body that causes your metabolism to be slowed down and causes obesity, digestive disorders, slow motility of food, chronic constipaton, fecal retention, depression, slow thinking etc, etc.
Obesity is most likely caused by the 8 or 9 years of not being diagnosed with Hashimoto's Autoimmune Thyroiditis and not being treated for the Hypothyroidism that it caused.
I saw research saying it does. I am not a
Understanding this Hashimoto things. How do I know if you have Hashimoto what is the link to hypothyroidism
What research? As far as I know there is no research that shows that treating hypothyroidism lowers the metabolism more than not treating it.
I can't find any such research.
Hashimoto's Autoimmune Thyroiditis is the Disease which causes Hypothyroidism in most cases. It was named after the Doctor (&Medical Scientist ) who discovered it.
Whenever there is an infection, as the Antibodies increase to fight it , then the Thyroid gland comes under more severe attack, rendering it unable to function as it should (Underactive ).
Hashimoto's isn't treatable it's the Hypothyroidism that it causes which is treated usually with Levothyroxine starting at 50mcg and increasing.
The tests that indicate Hashimoto's are raised Thyroid Antibodies, Thyroid function tests showing Hypothyroidism and Ultrasound scan showing inflammation of the Thyroid gland.
When over weight it's extremely common to be very low in vitamin D
Essential to test vitamin D, folate, ferritin and B12
These all need to be at GOOD levels for thyroid hormones to work
When very hypothyroid stomach function is poor and vitamin levels drop
So we frequently need to improve vitamins by supplementing
GP or endocrinologist should test these
Most common reason for being hypothyroid is due to autoimmune thyroid disease.
You need thyroid antibodies tested if not been done. Coeliac blood test if you do gave raised antibodies too
No, it does not. It speeds up your metabolism if you are properly replaced and converting T4 to T3 correctly. An underactive thyroid slows down your metabolism (and eventually kills you if not treated)
restartmed.com/levothyroxin...
That's what I read and the was an other article will try to find it
Megan
How much weight have you lost during these last two months that you haven't been taking any Levothyroxine?
It's dangerous to research on the Internet when you have little knowledge. Discernment is needed.
Several times you have come on here for advice - but still not giving any tests results details since the September 2017 tests.
Your TSH then was 24 and your T4 around 4.7 ?? All we know is that you started on 50mcg of Levothyroxine were retested, at some point told your results are in normal range now - no details given. And two months ago you decided to stop your Levothyroxine.
So how can anyone on here help you?
I don't have my most up to date i i asking these things as this is my battle with go they don't want to ref my they don't want to do the test i request. I have not lost or gained weight on or off the medd like i said before being on or off the meds nothing i mean nothing has changed me not been diagnosed ten years ago when i had my first child who us 11 to my third who is 2. My health is the same just more tired more nerve pain in low back/ hip area, carpal tunnel getting worse but they want to operate at its not evident that is could be link to my thyroid. Ach and pain was on vitiman d as i am low in that nothing changed. I am going to write done the test you have said and will ask them again. Once i get them i will post it and hear what advice you give
If your Vitamin D result was low you need your Vitamin D supplement. Which is probably Colecalciferol (D3) ? I guess between 1000 IU and 2000 IU every day. This needs to be taken at a different time from your Levothyroxine.
The point in seeing the results of the tests you had in December 2018 and your most recent results is to see if there could be any indication in these as to why you are still so unwell.
But - 2 months without any Levothyroxine will affect your health.
That's not research; that's one man's opinion. Do you have high rT3? Is your free T3 optimal? Do you have a conversion problem? What are you doing to address those if the answer is "yes"? Far more likely that you are just very undermedicated and your supporting nutrients are low, and you are possibly on the way to Type 2 diabetes, esp if you eat what your GP would call a healthy diet. You don't give test results so it's hard to say.
I had a health check the 40 year one they do and all was good,
So you don't have an underactive thyroid then as that would have been picked up in the health check if it was any good? A friend of mine went for all his health checks and was told he was overweight but everything was OK - now he's dead of cancer only a few months after the last health check so I wouldn't set much store by those checks! I've no idea what they test in 40-year-olds. I didn't even know there was check for people that young. You need to evaluate your actual results, not just accept "OK" as a diagnosis, esp if you are not well. At 40 you should be able to recover after a heavy night out well enough to perform at work in the morning in an active job without forgetting anything, and run for a bus and dance all night!
I think your doctor is keeping your TSH 'somewhere within the range - even 5+) when, once diagnosed the aim is a TSH of 1 or lower with FT4 and FT3 in the upper range. I wonder what your last TSH number was?
Yes but levo slow down you metabolism and yet all I get it I need to lose weight I am obese.
The thyroid produces two main hormones, T4 and T3. The Levo you are prescribed replaces the T4 that your thyroid is no longer capable of producing in sufficient quantities. Levo doesn't provide any T3.
With a poorly functioning thyroid people who are hypothyroid often have less T3 than healthy people.
T3 is the ACTIVE hormone and is the one that controls your metabolism. Too little T3 makes people sluggish, gives them all the symptoms of hypothyroidism that they suffer, and makes them put on weight.
T4 can only be produced by the thyroid.
T3 can be produced by various organs in the body, as well as the thyroid. When T3 is made in other parts of the body it uses T4 as the raw material. Another way of saying this is that T4 must be converted into T3 for it to be useful to the body.
Hypothyroid people often can't convert T4 to T3 very well. So, even if they have sufficient T4 their T3 levels may be too low for them to feel well and their metabolism will be slower than it was when they were healthy. This is why hypothyroid people often put on weight. It is not directly because of the Levo, although Levo can also adversely affect the rate at which T4 is converted to T3 and can make the weight gain worse.
Doctors blaming hypothyroid patients for being fat is unjustified, unfair and cruel.
You can ask for a referal anytime. Take a written list of all your symptoms to GP - say that despite being on Levothyroxine you are still very unwell with all these symptoms so you would like to see an Endocrinologist. Say you would like to be tested for FreeT3 to find out if the problem is that you're not converting. You understand that only Consultants can test FT3 now.
See how it goes.
Are you taking your Levothyroxine every day?
ps
It would help if you can take someone with you when you see GP, for moral support. And keep going back/ pestering GPs till you get your referal or full testing.
Your GP did request Thyroid Antibodies in September 2017 but there were no results for these on the photo of the print out.
No I stopped taking it as I did not see thing change so I did not see the point. I am not keen on med, I was on levo, Celebrex for inflammation and diclofenac for pain nothing helped so I stopped it all. If things done work I don't just take it. It's just the way my brain works
I thought you'd stopped taking it. This is dangerous because the Thyroxine hormone replacement medication is for life. It's not a drug, it's a synthetic hormone not from any animal.
Your blood tests results in 2017 say (scream out loud actually) that you desperately need it. You possibly were in need of it earlier - but now you have it, you must get back on it and not stop.
It's clear that you had improvement in your TSH and T4 results if they are now 'within' range. You also were increased in dose from 50mcg to 100mcg gradully, which was the right thing to do. However - it's possible that you need more OR that you need to see an Endo to enquire about some T3 also. Or both.
The fact that you are so unwell needs further investigation and addressing. You won't get better without replacement medication. So it's important that you get copies of your latest results (with ranges & date of test). Then people on here can help guide you. For example :
1) The "normal " range of TSH no longer applies to Hypothyroid patients. Many GPs and their staff don't understand this, they're not specialists. In absence of a letter from an Endo (which you don't have ) telling them to keep your TSH down below 2 they could possibly be leaving you with a TSH of 3 or 4. If this is the case - then you will still be unwell. PLUS - it will be rising now that you are not on Levo. Your T4 in 2017 (pre Levo) was very low.
The target Therapeutic level of TSH is maximum of 2 (for us Hypos). Most people on here say it should be one, in accordance with expert opinion.
You really need to get and keep your TSH level down to protect your Pituitary Gland from over working by producing too much. It was over 24 in 2017 - what do you think it might be now without your Levothyroxine? How long ago did you stop it?
This is why you need to get copies of your last results.
2) Your could have some nutritional deficiencies (especially Vitamin D ) so need testing for Vit D, B12, Folate and Ferritin. It would also be helpful to see your last Full Blood Count results plus any others.
If tests reveal any deficiencies they will need to be treated.
Also, without your Levothyroxine, you will suffer chronic constipaton and tiredness - everything (bodily functions) will be slowed. A full bowel puts pressure on the circulation and the spine - not to mention the Pelvic floor and organs (all mine are damaged now ) so all your conditions and pains will be much worsened.
I only stopped two months ago .i took it everyday in morning like clock work.
Two months is too long. You would be having Hypothyroid symptoms now.
You need to get back on 50mcg then increase by 25mcg in 4 weeks or maybe sooner or you could try to go to the 100mcg in 4 weeks.
Have a good read of the patient information leaflet with your Levo.
The other alternative is to see your GP and tell them how ill you were since on the Levothyroxine and why you stopped it. Or just ask for the Endo referal and give GP your list of symptoms. Say you really would like to see a Specialist and get fully tested including FreeT3 and FreeT4.
All the best with that.
We have to keep pestering GPs. It would be helpful if you can take someone with you.
Things has not changed before meds during meds and now not taking it I feel the same for the last 10 years + but only diagnosed two years ago.
Yes, I've read your posts. Things have changed. Your Levothyroxine brought your TSH down from a dangerously HIGH (well above range) level. It also, it appears , brought your T4 up to within range.
BUT - until you post ALL your results details since 2017 - no one on here can guide you. Being told verbally that your results are now in normal range may tell us that your Pituitary Gland is now being (somewhat) protected from producing super-high amounts of TSH, but it's not enough info for anyone on here to advise what you need to do next.
There are reasons you still don't feel well. You could have other conditions, other Autoimmune Diseases. You may need T3. Did you have any tests to check out your Adrenals? This should be done before starting Levothyroxine - so a good time would be now
Surely you need to get up to date results of the following tests and take it from there :
FreeT3
Free T4
TSH
(Preferably Antibodies TPOAb & TgAb)
Also : Vitamins - D; B12; B9 also Ferritin, Calcium .
You could try asking your GP for an Ultrasound scan of your Thyroid and Parathyroids.
Obtain your records of all results and add them on here or put in a new post making reference to this.
No one on here can diagnose you. But if you can get all your results and post full information there are good people on here who suffered (like you're suffering now) and will help guide as to what to do to get fully diagnosed and treated.
Probably a good thing to have stopped the NSAIDs as they can cause internal bleeding and a host of other side effects. Pain etc could easily be caused by undermedication for thyroid
I had to delete my first three attempts to answer this as I would have been banned from the group I have only had negative and disturbing meetings with my endocrinologist who feels all thyroid patients are hypochondriac and manic depressive and all we need is T4 only and prozac and a kick up the butt . A lot of endos are sadly lacking in any knowledge of the thyroid and are diabetes consultants and dont have a clue what is best for thyroid patients, that's my personal opinion and I wont be going back any time soon 😁
I am believe that
Giving an account of a personal experience with just one Endocrinologist is one thing. But - making sweeping genralisations of a 'lot of endos' that you have never met and have no knowledge of . . . . . . . How is this helpful in these circumstances?
Not everyone can afford to spend thousands of pounds on Private Consultantations, private prescriptions and private blood tests for the rest of their lives.
I did STATE this was MY opinion and I'm allowed to do that and as for generalizing iv read more negative comments about endos than positive so actually il stand by my original comment as I'm sure hundreds of members can confirm this is the usual response from an endo and it's rare to find a good one that actually listens to and understands our condition , so yes , my opinion is my endo SUCKS and actually blamed my condition on my life limited son so I'm hardly likely to give positive feedback am I, jumping on your high horse has resulted in you looking rather silly . There are good endos obviously but they are the minority and I am a full time carer for my son so iv had to give up my job to care for him and my endo blames THAT reason for my symptoms ?? I dont pay thousands either I dont have a lot of money but what I do have is HOPE that one day all endos will actually learn about the thyroid and be able to help us instead of throwing prozac at us .. have a good day 😁
No fighting guys Jodie I understand what you say. My GP want to have my memory tested cause I don't remember things, but when I give them a list of test I want them to run the refuse. One gp says sub clinical symptoms don't exist one say I might have it. Some of them don't know the ass to the elbow. They wanted my to see a psychologist as to them its all in my head.
Sub clinical technically means "without symptoms", not "levels outside the normal range but not high enough for us to treat". But GPs like to have it backwards: if your levels are what they consider sub clinical you can't have any symptoms, so you must making it up. Not, you have symptoms therefore you are not sub clinical.
I get you , my gp once said T3 is old fashioned and not needed anyone diagnosed with thyroid disease should only take levo , he also said prozac is what I need to help with my depression and memory loss, the endo told me to stop taking supplements like vit D3 and B complex and magnesium as there is no proof they help with symptoms and are not needed and are basically a waste of money he too prescribed prozac, I obviously didn't accept the advice or the prozac instead I source my own NDT and the best advice that anyone needs can be found right here in this group, good luck on your journey 😁
My goodness, how old fashioned it is to drink water and eat food.
I hope your GP has stopped both.
I'm so concerned about the fact that my gp has no knowledge about thyroid disease I'm actually in the process of a mutual exchange to move to another parish where iv done lots of research and found that surgery has gps that understand thyroid health and prescribe T3 , plus the care for my son will improve significantly, it's sad we have to go to these lengths and I'm giving up my beautiful seaside home which I love but feel both myself and my son are not receiving the care we both need .
It looks as they don’t know what to do or don’t want to know and don’t want you to bring your symptoms to them that’s what I have had from some GPS.
Hi
I was so lucky with my specialist. ( sadly she is full) The better ones “ tend “to be older and more experienced.
Slowdragon and Susie have given great replies for ages and it’s important to get the basics right.
If you go to drmyhill.co.uk and on the home page type in orchestra in the search bar in the top right hand corner.
The article was written to help people who cannot afford or find a consultant. It is very helpful and user friendly.
So basically it’s diet
Absorbtion
Vitamins
Then adrenals and the thyroid meds.
It’s a great shame she offered to a mitachondrial function test for non patients this year( which I think has now finished) The benefits agencies accept this report , if your levels are low you have a really realistic chance of receiving some benefits( esa use it). Her covering letters, I’ve seen, are amazingly detailed and as I know her professionally she has little hassle with the claims.
That said over 85% of her patients are now back working.
It is all covered on the web page I mentioned.
Good luck.
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