Thyroid UK
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Please need your advice !!!!!HELP!!!!

I need your help people -I need to find a really good private endocrinologist ASAP I am from Burton On Trent iam ok to travel ideally one derbyshire but doesn’t matter if he or she is good as my endo is not prescribing me any thyroid med and treating other issues rather than thyroid.My thyroid is TSH 18.07 and FT4 8.3 i have hypothyroidism.I suffer from extream constipation so iam bleesing inside now!!!i need help ASAP.I have started 25mcg levo on my own as I can’t continue with this dangerous constipation .please Anyone help me!!!!!

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Why can't you just send her a private message? She doesn't have to send you one first.

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I'm in Sheffield. Looking for an alternative to Levothyroxine.

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Why are you looking for alternative?

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Still get very tired. Never felt any better on Levothyroxine.

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Hi!

With results like that why had your GP not immediately started you on Levothyroxine? & how come you got to be seeing an Endo?

If your GP hasn’t the wit to start you on medication with such a high TSH, unless of course there are other factors or reasons we’re not aware of, maybe a GP with better thyroid related knowledge might be a good start!

As for the Endo, give me strength! Should be disbarred from treating thyroid patients until undergoing successfully a substantial chunk of cpd!

Hope someone can help re a decent Endo within your reach.

Are you able to tell us which hospital trust this Endo works in?

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PS Ari3 please re-post those test results together with their reference ranges & the date of the blood sample.

If in fact your GP is not aware of these results because they were undertaken at the request of the Endo & not copied to the GP Practise please ensure that you inform the Practise and request that they ensure they are brought to your GP’s attention immediately!

And if it turns out your GP was not aware ... insist that you be told yes or no, not aware beforehand ...

& if not, request an appointment immediately & ask for appropriate medication. If refused ask why and come back here asap.

But anyway, please keep us posted ... this is really not good at all from what you’ve relayed to us here!

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Works in Nothingham spire hospital

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Sorry to hear about your serious problems Ari3. Do hope you will get help and support soon. If you saw the endocrinologist at Nottingham Spire hospital then I believe I know who you ate talking about, and he is a private consultant, Is that right? If so I have seen him too. Has been useful in some aspect.

However I really don't understand why a GP should not be more helpful to you with such dreadful results. It make me so angry and frustrated to know so many GPs are absolutely useless and totally uncaring. Wishing you better luck and that you will soon be receiving the reatment you need. However don't expect a rapid response to treatment, it's slow aand progressive.

With best wishes.

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Nothingham spire hospital

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Oh Ari, you need to change your doctor, you have an idiot - and there are many who are idiots. Even a half good GP should be able to raise your dose of Levo to a level where you can bring down that frighteningly high TSH. Hopefully someone can give you a reference (I am not in England) but I would go to the hospital emergency and TELL them you need a proper dose of thyroid meds because you are bleeding. Please keep us posted - I'll be worrying about you.

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P.S. Has your "doctor" prescribed iron tablets for you which might be causing the constipation? If so you might want to cut back on those until your condition eases up a bit.

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No iron supplements just in diet as my ferritin was low.I went to gp and I will start on 25mg for now till I see nhs endo.Iam not sure what to do with private one :( should I book another appoitment?

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LAHs

What has the GP done wrong? Have you seen the poster's previous posts?

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Hi Mary-i, I think the doctor should have been more aware of the difficulties of getting a patient to the optimal dose and given her more encouragement to return if any hyper symptoms began to develop. I know it's difficult for the doctor in the early stages (I drove mine crazy) but once that initial effort is made neither party has to do very much except pick up prescriptions a couple of times a year.

And no I did not read previous posts, I always think that the things people ask about in the moment are the things which are bothering them most regardless of history. Sometimes you just need reassurance of things which are niggling at you, not always logical, I know.

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LAHs The OP has been prescribed a starting dose of 50mcg Levo by their GP but didn't like what they thought were the side effects - described as going from hypo to hyper - and without the GP's knowledge stopped taking it. So hardly the GP's fault.

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Yes I stopped u know why because my tsh was 0.1 and ft4 23.9 and ft3 6.9 and I had severe palpitations such as huge panic attack symptoms my acne and pimples doubled I had terrible hair loss due to the dose and all other terrible side effects which I won’t mention.I have been do gp today and we agreed I will do 25mcg meanwhile to ease my symptoms and than blood tests to see if I need increase.I pushed him to do anti bodies and globulin too.finally !!! Would you continue with so big symptoms ????i don’t thinks so you would be scared till death crying sick off trust me !!!! Iam re starting medication again meanwhile waiting for nhs referral to endo.hope this will help me ! I need some answers from doctors and tests rather than just giving me random medications

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I agree that was my fault

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Hi NomoreT3

Well, if 50mcg is causing hyper symptoms the doc should do another blood test and lower the dose. I guess he didn't do this so Ari did what she thought was right with (probably) a little knowledge. If the doc is not taking charge of the problem then we have to do our best to help ourselves. If 50 is too much and 25 is not enough then go for ~37, if that is still too high or too low then go for the mid point of the high or low range. This is not rocket science and the doc should have stepped in to help not leave Ari hanging out to dry.

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You're not understanding the situation LAHs. The GP did not leave the OP "hanging out to dry". The situation was discussed with the GP and a course of action agreed between them, but the OP then went away and chose to not follow that - instead deciding to stop taking the Levo completely, unknown to the GP. The GP has not been at fault.

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I stopped because of side effects and dangerous palpitations where I ended up at hospital and I went through hyper stage from hypo the dose was way too much showed also in blood.So I went back to gp and gp said 25mcg so I stopped all myself gp new about it but when I offered I want to see private endo he straight away agreed and I walked away from his office.i guess he was happy when I left his office ...

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Needless to say any other checks was not offered any other blood test investigations

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Hi NoMore3. I understand what you are saying and agree with you somewhat. But I think that if I were in a situation where a pill I was taking was making me ill, my first reaction would be to stop taking it. It takes a bit of experience and knowledge to know to just reduce the dose. The doc should have known that a hyper reaction could have taken place, alerted the patient and encouraged her to return immediately for investigation and change of dose if certain symptoms arose. But on the plus side I agree that 50mcg was a good guess for a starter dose.

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I really like and respect your understanding I had 123bpm even staying in hospital after 4hours it was scary !Nobody told me about any side effects or anything .All I read was info in pack and I never expected 50mcg could bring such side effects as it was written down 50mcg is a starting dose.the worst part was my muscle pains in legs arms shoulders everything gutted like someone beated me up :( I hope 25mcg will help me a bit better

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Many of us have learned these things the hard way as you are doing now. We feel sluggish when the dose is too low and twitchy/nervous when the dose is too high. I am sorry to say that you have gone through this in spades! The advice you have been given here is excellent, print it out and stick it on the 'fridge, that's what I do for all the important things I must remember to take/eat.

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You need to sort the constipation quickly. Movicol sachets can help..and magnesium supplements are also effective - try 400mg daily. Good luck with your endo search.

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Are macrogol compound oral powder ok?

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Ayesha

What's happening.

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Ayesha

We were hours on here Christmas Eve.

See your GP today????

Or buy some Lactulose medicine and Fybogel sachets (orange). You could have bought Fybogels yesterday. These are both natural and need a few days. Then keep on them till you are back on healthy diet.

You are not taking 25mcg "on your own" . Well, not according to your last post. You told me GP reduced from 50mcg dose to 25mcg because of high T4 result and that YOU stopped taking Levothyroxine altogether because you attributed some new symptoms to it after you learned of result.

See your GP today - be honest and start to get everything sorted. Have ALL nutrients levels tested as previously advised.

You paid to see an Endocrinologist privately. He stopped your Levothyroxine and gave you 2 drugs for PCOS but your report says this diagnosis is being queried (?PCOS).

Hypothyroidism can cause symptoms of PCOS. So FIRSTLY do get your nutrients levels (Vitamin D; B12; Folate and Ferritin and Calcium ) investigated and sorted AND your Thyroid.

You only just started back on 25mcg. It hasn't had a chance !!! Ask your GP - today - if, given your December results, you should actually be on 50mcg.

Google search cks.org.NICE.guidlines Scenario treatment of Hypothyroidism. I copied it for you but don't know how to paste on here. If you read it through before seeing GP it will give you an idea of what he is supposed to do.

Anxiety and Stress can cause constipation or make it worse. Please try and get that resolved.

Mention blood in stools to GP this justifies refeal to Colorectal Specialist. However it could be caused by the straining.

Take care.

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Been to gp today :

1.he prescribed me Macrogol compound oral powder sachets for constipation to ease and explained that it is cause of my December results of course that I have so low thyroid levels which is causing me this all.

2.he also told me that I neeed to be treated ASAP but he will put me on 25mcg for now 4-6 weeks to come back and do the bloods and see if need increase.Meanwhile I requested him to see nhs endo so he sent them referral.I can wait that is not a problem.

3.Talking about Spinoroloactone and Metformin due to my (?PCOS) I really don’t know why he put a question mark there Gp said this is something different than thyroid issues so he couldn’t give me advice on that.and now Iam thinking what to do myself?it says I have raised LH and FSH ratio.What it means God knows

4.also I asked this gp to do my antibodies TPO and GLobulin which are signals if I have autoimmune thing.He didn’t say no.i have done them today.

5. What should I do now with my private endo?should I book another appointment and explain all to him or should I continue with Metformin and Spironolactone?

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Only you can decide what to do Ayesha. You can Google search LH and FSH .

No one on here is medically qualified. I only found out that Spironolactone and Metformin can be used in the treatment of PCOS from a Google search.

You could write to your Private Endo about your concerns - but you mentioned in another reply that he's on leave?

You could make another appointment with your GP to ask again about these. Ask what you are not supposed to eat whilst taking the Spironolactone - explain that you miss your healthy diet.

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Hi Ari3

For your constipation problem you could try daily dosage of Movicol or similar it helped me greatly. I was prescribed it after a trip into hospital October this year for perianal abcess surgery. I think you can buy it over the counter if you cannot get your GP to prescribe. Wishing you relief!

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Try not to panic and you have to give members the proper story. i.e. from your comments above it sounds as if you are very stressed as Endocrinologist is not prescribing but Mary-intussuception has mentioned that you had been prescribed 50mcg by your GP but have now reduced it to 25mcg.

You have had advice re constipation and follow the suggestions.

If we are hypothyroid, it has taken years for us to become unwell enough to be diagnosed. We can also suffer from awful symptoms even when starting taking thyroid hormone replacements (levothyroxine). We have to take it when we get up with one full glass of water and wait an hour before eating as food can interfere with the uptake.

We might even feel worse when starting but we cannot rush and we have to have a blood test every six weeks and get an increase of 25mcg levo each time.

Blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24hours approx between last dose of levo and test and take it afterwards.

We all know how bad we can feel before we are diagnosed and afterwards but it is because we have to gradually increase the hormones (levothyroxine) until our symptoms are relieved.

Unfortunately it is not like a headache when we can take one tablet and headache is relieved in about an hour. It has probably taken years for us to gradually deplete thyroid hormones so we have to also slowly build them up again.

We have private Endocrinologists and if you email Dionne at tukadmin@thyroiduk.org and ask for a list.

Always get a print-out of your results, with the ranges (ranges are important and enables members to respond).

GP should also test B12, Vit D, iron, ferritin and folate.

Always get a print-out of your results, with the ranges, for your own records and you can post if you have a query.

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The propa story is if u follow my posts in my profile and read all the story.iam off to gp this morning !will text u sooner I have emailed Dionne also thank you so much

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Hi Ari3, you only have your name on your Profile. Many members do not have time to go through past questions before responding and unfortunately it isn't possible to find out their initial diagnosis/history before responding.

On the profile you can add in a short history of when diagnosed, with what and what you have been prescribed etc.

If you click on most members' names you should find a bit about their thyroid background.

I hope your visit to the doctor today will be advantageous.

If you click on members' names, hopefully, you will also find their history.

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Hi shaws

Can you confirm that tukadmin@thyroiduk.org is correct. I’ve tried to contact them to obtain the list of private media but get an error message.

Many thanks ali8655

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Just a quick question I have ringing in ears very very often is this a symptom of hypothyroidism too?

I am back now on 25mcg as per my gp suggested .But actually he told me to start on 50mcg based on my last results TSH 18.07 and fT4 8.3 but as I had last time palpitations from 50mcg and it raised dramatically TSH 0.1 ,ft4 23.9 and ft3 6.9 and all bad side effects he told me 25mcg will be your starting point .

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O.K. How long have you now been taking 25mcg levo? Tinnitus is a clinical symptom. Tick off the ones you have on the list below and I think you will have more than 1.

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

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Third day now on 25mcg

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I have more more than a half of the board you sent me of symptoms yes

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Doctors used to treat us by our clinical symptoms alone, on a trial basis. Nowadays it is our TSH which is used and sometimes we can suffer with the symptoms as the dose should be gradually increased until we have relief of them. Some doctors only go by the TSH which we, the forum, don't believe is the best way to help patients recover.

On this forum you will find that nearly all the members are those who didn't get diagnosed or who are surprised they aren't improving.

That's why we have to listen and learn and it a while we will feel much better. When you have tests for thyroid hormones remember it has to be the earliest etc. Levo should be taken first thing on an empty stomach and wait about an hour before eating. Little things can help us improve more quickly.

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You are completely right.My private endo is out of this country on holidays till 14th Feb so iam just now going to Gp Meanwhile waiting for nhs endo (could take 1-3 months) but now I am concentrating only on my thyroid issue as my numbers are clearly hypothyroidism and needs to be addressed with Levothyroxine at the moment so I don’t suffer from mainly weight gain and severe constipation with bleeding of inside! Sometimes we have to listen to ourselfs don’t we to help

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Yes Ari3 you are right. I think our instinct kicks in and leads us along the right path.

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But my concern here is I was Hypo before (I don’t know results as my gp lost results ) and I started on 50mcg after four weeks it went out of range and my Ft4 was very very high like 23 and tsh 0.01 and had lots of hyper symptoms palpitations etc u name it.So could it be that 25mcg is a good start for me now and see how it goes?or could it be something else?

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If you have thyroid antibodies (did doctor check these) as they can suddenly flood your system and make you feel as if we were hyper thyroid instead of hypo.

Always get a print-out of your results with the ranges. The ranges help members to analyse and suggest things to you. I shall give you a link about Autoimmune Thyroid Disease which is also called Hashimoto's and that is the commonest form of hypothyroidism due to the person having antibodies. The antibodies attack the thyroid gland until we are hypothyroid but going gluten-free can help reduce the antibodies and the attack.

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

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

We have to read and learn and it is as if we were taking a degree sometimes as we have to absorb facts and sometimes we have brain fog that we cannot make sense of them.

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Yes today I asked to check my anti bodies TPO and anti-thyroglobulin too is this good idea?

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Yes it is a very good idea to have these checked. You will soon know more than GP. :)

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Lol thanks I think I will book an appoitment with nutritionist very soon :)

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Yes have learn to ask for print outs now I can see how imp they r for our own records .

So if I have Hashimotos How this can be treated than?

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It is the same treatment as for hypothyroidism but you can reduce the attack of the antibodies by going gluten-free.

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Totally gluten free?and what about lactose? Do you think also could be good to test food intolerances with nutritionist?i am eating gluten free foods I start to introduce myself with them.

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It is up to you whether or not you test for nutritional deficiencies but if you get B12, Vit D, iron, ferritin and folate tested first as they have to be at an optimum for thyroid hormones to work effectively.

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I did those two months ago and my vitamin d was 85 (iam taking supplements) ferritin was 24 (lower side so eating liver one or twice a week ) folate is good vitamin b12 also good .i will be doing those again in two weeks time and will come up with results on here !

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Tinnitus is also a symptom of B12 deficiency. That stopped when I eventually started having B12 injections. Unfortunately hypothyroidism and B12 deficiency have similar symptoms which make it more difficult to make a correct diagnosis.

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B12 was checked it was fine endo said and gp .i will double check all vitamins and minerals again in two weeks time

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Request a copy of your tests results. Too often GPs say everything is fine or normal when often it is notthe case. Also the level of low B12 in UK is much too low... anything below 500 might indicate deficiency. Once I had B12 the tinnitus stopped. Worth checking.

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If the endo is checking you for adrenal issues that MUST be resolved before starting on thyroid medication

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Hi

That’s not actually true. Adrenal issues affect the thyroid but it’s v hard to tackle both at the same time.

There are no issues starting thyroid meds then having dhea and cortisol tested. Everyone is different so not everyone has adrenal problems that are life threatening.

But Shaws and Mary are right it’s time consuming to read all the previous posts and then find out the information is not accurate.

Good luck going forward but be as honest as you can be- people will always help you.

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Blondiejayjay I can't agree with you. There are far reaching repercussions of being without adequate thyroid hormone whatever the cause; and resolving adrenal issues can often be no easy/speedy issue to resolve.

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Extract from Dr Rind

Drrind.com

.The thyroid and adrenals behave as if they have an inverse relationship with each other. A low function in one can look like a high function in the other. See the Metabolic Scorecard to get a better understanding of where your problem may lie. A mixture of both thyroid and adrenal problems provides the greatest challenge in treatment. If only the adrenals are supported, some adrenal symptoms may improve but the symptoms of hypothyroidism may become accentuated. Typically, these can appear as weight gain, fluid retention, rise in blood pressure, constipation, depression, etc. Conversely, if the thyroid is strengthened but the adrenals remain weak, we may see an improvement in hypo-thyroid symptoms but we may have an increase in adrenal fatigue symptoms such as anxiety, insomnia, hair loss, dryness, and unwanted weight loss. I have found that the improvement of hypothyroid symptoms tends to be short lived when the adrenals are not supported. For this reason, I tend to supported the adrenals first allowing the body’s metabolic state to return to optimal, then provide thyroid support only if needed

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Sorry, but that article is contradictory at best; and takes no account of any far-reaching "hidden" damage taking place behind the visible symptoms mentioned, for instance to the heart and the brain.

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Hi, sorry you are unwell. There is an endocrinologist that works from Nottingham and the Nuffield in Derby. Which is in little over so very close to Burton.

He is a lovely man and has helped 2 of my friends with their hypo problems. He hasn't sorted them out completely but they are both much improved since seeing him. He is pro T3, a good listener and open to suggestions from yourself, which is rare for any Dr. Be aware though he often runs very late and an appointment can be an hour long. He likes you to write a list of your symptoms and time line to take in with you. Good luck getting back to good health.

(edited by Admin)

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He is my endo iam not saying he is bad endo a lovely man but he is not concentrating on my thyroid issue that is why I came there but he is concentrating on how to conceive (and I have never tried for a baby in first place) I think he misunderstood me .He checked my LH and FSH and said that the ratio of them isn’t right LH Is raised against FSH (my periods are little messed up since thyroid issues) so I been prescribed Metformin and spinorolactone to treat this .He didn’t explain exactly why I guess to have levels back of LH and FSH.on my last bloods my TSH was 18.07 ft4 8.03 and iam not sure he has seen them.and in report it says she has got thyroiditis and we will monitor this in the future.I did bloods on 12.12.17 I hope he will see them sooner.meanwhile I went back to gp and will start on levo 25mcg to start with .

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Thought you already had started back on 25mcg?

Is GP arranging blood tests to check all nutrients?

Did GP advise staying on the Spironolactone and Metformin for (?) PCOS? Because it seems that being on these may be the route of you stressing about what you can/cannot eat?

Have you discussed what foods you are safe to eat now with GP?

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Ive been on Levothyroxine for over 10 years. Used to be inclined to constipation, not now. Don't feel any less tired though.

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