What now?

Latest on things at my end.

Blood tests done on Wednesday last week - the nurse who took my blood has said for me to expect my results within a week, sooner if anything has cropped up. Endo called me on Friday to discuss them and for me to call her back as she left me a message, but despite me calling her secretary I have not heard back.

Endo appointment - Endo has moved my appointment from 15th April to 20th May. So a much longer wait for me despite her saying she would see me in 3 months' time. Not very happy about that but don't know what I can do about it.

Transfer to another hospital - I requested to her in an email that I be transferred to Salisbury District Hospital but the Endo has not called me back or written to me to say that would be ok. So to me that seems like a non-verbal refusal.

Stopped medication - I stopped my medication due to quite a few reasons:

* I do not want my medication moved up again if the blood test is abnormal as I have been told that if I'm slim I cannot afford to be on a really high dose of thyroxine.

* I want to be proved right at the ultrasound appointment to have a goitre as if I take the medication the goitre may go down at that time and I would have wasted the sonographer's time.

* Because I could have outstanding adrenal issues the thyroxine could affect my adrenals even more.

* My Endo does not think my symptoms are caused by Hashi's and has instead blamed them on Vitamin D deficiency.

Ultrasound appointment - I am still waiting on a letter for a date and time for my thyroid to be scanned. This was requested Tuesday last week and I am sure that the last time my GP ordered an ultrasound scan, the appointment letter came much quicker to me than it has now.

Recent tests

Nov 2011

TSH - 5.2 (0.27-4.2)

FT4 - 16.8 (12-22)

No medication

Dec 2011

Ultrasound of ovaries - normal (suspected cyst/endometriosis) but very painful scan

Jan 2012

TSH - 2.2 (0.27-4.2)

No FT4 as TSH normal

Feb 2012

Ultrasound of neck - thyroid mildly enlarged and mildly vascular

Jan 2013

Anti-TPO - 84,000 (<34)

TSH - 0.69 (0.27-4.2)

No FT4 as TSH normal

May 2013

TSH - 22 (0.27-4.2)

FT4 - 10.9 (12-22)

Thyroxine started at 25mcg, then 50mcg and then 75mcg

Aug 2013

TSH - 4 (0.27-4.2)

No FT4 as TSH normal

Thyroxine increased to 125mcg - not sure why if GP said TSH normal???

Nov 2013

TSH - 4.3 (0.27-4.2)

FT4 - 15.3 (12-22)

Thyroxine increased to 150mcg

FT3 - 5.5 (3.1-6.8) - Done privately

Dec 2013

Anti-TPO - 41,000 (<34)

TSH - 4.6 (0.27-4.2)

FT4 - 15.6 (12-22)

Thyroxine not increased - not sure why???

Vitamin D - 43.6 (<75)

Vitamin B12 - 363 (180-900)

Ferritin - 22 (30-400)

Jan 2014

TSH - 2.7 (0.27-4.2)

No FT4 as TSH normal

Anti-Nuclear Antibodies - positive (speckled)

Short Synacthen Test (SST)

Basal cortisol - 622 nmol/L

30 minute cortisol - 915 nmol/L

60 minute cortisol - 985 nmol/L

(Appropriate stress response)

Feb 2014

Still awaiting results


* Heavy/painful/early/late/short periods

* Cramps

* Fatigue

* Excessive daytime tiredness

* Loss of outer third of right eyebrow

* Inability to gain weight (although my weight has recently increased to 8 stone from 7.10 stone)

* Dry skin

* Inside of throat around thyroid area itchy (new and comes and goes)

* Constipation (worse in morning and has not been as frequent)

* Headaches (not as frequent however)

* Slow pulse but can get quite fast too

* Blood pressure goes from low to high very easily

* Low BBT, currently 36.2 degrees Celsius but has been as low as 34.3 degrees Celsius

* Muscle stiffness

* Nausea

* Hyperpigmentation around eyes, legs and back (Endo's observation)

* Cold intolerance

* Raynaud's

* High tolerance of heat

* Inability to control bladder/sudden urges to go/incontinence/leaking (not a new symptom, had it all my life but might contribute to something - neither GP or Endo know of this)

* Clumsiness

* Mood swings

* Anxiety/depression

I don't see how the Endo can blame all of these symptoms on Vitamin D deficiency...


Vitamin D - Better You D: Lux Spray 3000IU (was D3 Fultium which my GP stopped as she had said my levels were not horrendously low. But since she does not know of the spray I have continued to take it)

Vitamin B12 - Jarrow's Lozenges at 1000mcg. My lifestyle therapist recommended I take them but my Vitamin B12 is not very low.

Iron/Ferritin - Was Ferrous Fumerate. Now Spatone at 1 sachet. I cannot take 2 sachets just yet as I have had adverse reactions to taking 2.

Levothyroxine 150mcg - I took either Wockhardt or Actavis thyroxine but due to the above reasons I have stopped.

Thanks for any help

Jo xxx

49 Replies

  • You have a scan showing a goiter two years ago. Your GP has arranged an ultrasound at your request, probably to allay the fears you have. Certainly not for you to decide to stop medication in a misguided attempt to regrow the goiter in order to not waste a technician's time.

    I think you are foolish to stop your Levothyroxine. You will be undoing the good that medication has done since last April and setting yourself back to square one, which was presumably very unwell.

    I was, and am, very slim. Oncologist and endo had no problem prescribing me 200mcg Levothyroxine. Goodness knows who advised you otherwise. You should ask for published data next time.

    Most of the symptoms I expressed to my surgeon and endocrinologists were dismissed as "probably not to do with your thyroid". Some were, some were due to vitD deficiency and some were due to over-replacement. Endos have a mindset that TSH in range = everything okeydokey ergo symptoms can't be thyroid.

  • Hi Clutter, thanks for your reply.

    The person who told me I should not be on a higher dose of Levo was a hypothyroid sufferer herself and she was very big.

    Jo xxx

  • There is no good reason for restricting levo just because of size. The are many reasons why a person may need a seemingly large dose. Before TSH testing it wasn't unusual for people to be in much higher doses to feel well.

    I'm quite big, obese actually, but my dose of T3 is tiny compared with another member on here. She's on more than double my dose. It really is an individual thing :)

    I hope you get it all sorted out soon .

    Carolyn x

  • Hi Carolyn, thanks for your reply.

    I hope I get it sorted soon too.

    Jo xxx

  • Would that be the same dipstick who look at your scan and told you you had cancer?

    Be wary of unqualified opinions Jo and DON'T stop/adjust your meds on their say so without checking with your GP or HU first. You will become very ill otherwise.

  • Hi Clutter,

    no it was not the same dipstick who looked at my scan. :)

    I didn't check with anyone on HU first about stopping my meds.

    Jo xxx

  • You could ask your GP to refer you to a different endo./hospital BUT that would mean starting all over again. The NHS is overloaded so appears to move very slowly. We all have issues with the "not thyroid related." and the way we are treated,this is the reality of thyroid illness. Calm down and be patient, it will all come right in the end.xx

  • Hi Beaton, thanks for your reply.

    I think it's going to take ages for my GP to refer me to another hospital so I guess I should just stay with the one I am with for now.

    Jo xxx

  • So you are happy to make yourself even more unwell just to prove a point and because someone has said you shouldn't take a higher dose, do you realize there may be a long wait for the scan? So you could be off meds for many weeks. Not really a bright move is it?

  • Hi hypohen, thanks for your reply.

    No, I am not happy to make myself more unwell but my Endo does not believe I have thyroid-related symptoms.

    I thought seeing as I am hypothyroid/Hashi's with problems swallowing it wouldn't be a long time to wait for a scan.

    Jo xxx

  • You have to accept that you are no different to the many others waiting for scans, I have been waiting for 2 months for a parathyroid scan and still have no date.

  • Ok, thanks for this info.

    I'm not saying I was any different to anyone else waiting for scans, but when I was last referred for an ultrasound scan I was told over the phone I could be seen the following week.

    Jo xxx

  • Jo, like the others here I really don't think you should stop taking levo right now.You will end up just going round in circles and no clear idea what's causing any problems.Be patient,which can be frustrating we all know,but that will give a clearer picture.IMHO don't meddle with it just now,hang on and see how scan etc goes first.

  • Hi Cupi, thanks for your reply.

    I have been going round in circles even when I was on the Levo and I didn't feel right even when the TSH was back in range back in August last year.

    Jo xxx

  • Altho your tsh was in range it was still very high. Most people feel better with a tsh of around 1.

    Jo xx

  • Hi, my GP does not agree with it being anywhere near 1. Don't know how to deal with their way of thinking about this.

    Jo xxx

  • With all of your problems I personally think that you need another doctor although that might hold things up but you might get better treatment. Your doctor really seems to know next to nothing about the thyroid or vitamin d or......

    Jo xx

  • I agree with the above, you may want your goiter to grown back but what are you doing to your heart in the mean time. Coming off of your thyroid meds will be causing your heart considerable strain, along with many other parts of your body.

    We all have to wait weeks, sometimes months, for endo appt and scans - it has taken me over a year to finally get where I want to be, but I got there in the end. So my advise to you is re-start your thryoid meds, before you cause yourself serious harm, and learn to be a bit more patient. In trying to prove a point regarding your goiter you may be causing yourself a whole load of trouble.

    Moggie x

  • Hi Moggie, thanks for your reply.

    I just don't know why my GP and Endo don't believe I have thyroid symptoms and are blaming it on Vitamin D deficiency.

    Jo xxx

  • I agree with everyone. You will end up causing more issues...as I found out the hard way! I was diagnosed with Lupus back in September, and whilst trying to get that under control, my whole body went to pot! It's only now 6 months later they have finally gotten to the bottom of it.

    My TSH was 31 then upto 46 on my last bloods with my t4 at 11! I've had to up my doseage to 350 mcg over the past few months and only now does it finally seemed to be responding...it's a very slow process. I have lots of others auto-immune disease and I would give anything to be healthy and back to some sort of normal life.

    My Rhuemy, advised that although I have lupus a lot of the symptoms have made worse by the HYPO!

    Plus, not sure if you watched Marilyn Monroe autopsy... She has hypo that had gone undiagnosed and thought may have contributed to her death.....

  • Hi Houghton73Shaw, thanks for your reply.

    I am being told different things by my Endo as well as the other reasons hence why I have stopped.

    Jo xxx

  • On the vit D deficiency, my GP tested mine when checking bloods this time last year, when it complained of fatigue, aches,pains etc...and gave me 60,000iu to start with and then the bi monthly doseage...I took them but still felt no better! The point is try it...take the meds to see if they do improve things, if your not happy ask to see another endo... Mine have just cancelled my appointment next week till 16th June?? I am waiting for an MRI scan for my pituarity gland because of the high TSH...

    Everyone is different, I am hypo but not very big... Please listen to all these lovely people, I have found their advice on different matters very informative, things I didn't know even after being hypo for 15 years x

  • Hi Houghton73shaw, thanks for your reply and info on the Vitamin D.

    I researched into symptoms of Vitamin D and there was no mention of fatigue being caused by Vitamin D deficiency - which is why I have doubted my Endo's opinion on my symptoms being Vitamin D deficiency related.

    I did ask my Endo to transfer me to another hospital but she didn't reply to my email - which I took to mean a non-verbal refusal.

    Jo xxx

  • Jo,

    Noticed on your original post you wrote:

    Anti-Nuclear Antibodies - positive (speckled)

    Is that being investigated because that's what they look for in other auto immune disease such as lupus, sjorgens and RA. You don't mention going to see a rheumy? That's who would deal with positive ana result not an endo.

    Amanda x

  • Vitamin d deficiency does cause fatigue :)


    from the page :"

    General tiredness, vague aches and pains and a general sense of not being well are the common symptoms."

    and again on here


    "The symptoms of vitamin D deficiency are sometimes vague and can include tiredness and general aches and pains. "

    You might have both which is very very common...so many people with Hashi have vitamin d absorption problems.

  • Hi Jo,

    Not sure why you would stop medication. There are people on this site absolutely desperately fighting with GP's just to get a trial of the drug. I personally had a year of hell and severe illness before I got anywhere and I know it will take just as long to start to feel normal.

    I have quite a large goiter and still praying that the medication will help it reduce in size. I must say though that the medication has helped with my hoarse throat and I don't sound so much like a dude any more.

    Don't put your body through this Jo, you have to be kinder to your body and listen to it. Most of your symptoms above appear thyroid related to me. x

  • Hi Pennyrose, thanks for your reply.

    Unfortunately my Endo does not agree I have thyroid-related symptoms.

    Jo xxx

  • Hi Jo- Your endo is probably ringing about your blood results- if they are out that would be because you have stopped the levothyroxine- you did tell her you had done this? or you must tell her when she rings. It is only fair.

    I know from experience TSH and FT4 etc can change very quickly even by missing a couple of doses. It does in my case anyway.

  • Hi Friz42, thanks for your reply.

    Well, I don't know why my TSH was normal when I stopped my thyroxine before. So that makes me think I have no thyroid problem. Plus my Endo does not think I have Hashi's now.

    Jo xxx

  • Hi Jo, why does your Endo now think that you don't have Hashimoto's? Did she explain why she changed her mind?

    I remember you were awaiting her call. Have you heard from her? Was it in relation to your blood tests? If she says that you don't have Hashimoto's what does she think causes your symptoms?

    It must be all so confusing for you. I wish you all the best.

  • Hi Jow11, thanks for your reply.

    My Endo said during the appointment back in January this year I have Hashimoto's, but in her report she has written that I was diagnosed with primary hypothyroidism in May 2013 (Which I take to mean Hashimoto's) and at the end of the report she has put that my symptoms are most likely due to Vitamin D deficiency.

    I had another missed call from her however I was out at the time and so I will be chasing her message up.

    She has no idea what is causing my symptoms apart from the assumption of them being caused by Vitamin D deficiency.

    Jo xxx

  • Hi Jo, thanks for your reply. While some of your symptoms may be caused by vit D deficiency, many I think could still be attributed to being hypo.

    As I'm sure you know from reading this site, many people don't feel well on levo alone. Many need the addition of T3, some need to be on T3 only and others on NDT or a combination of those. Have you considered that you might be one of those people?

  • Hi Jow11, thanks for your reply. :)

    I have considered taking T3 as well or NDT, yes, but my GP is not willing to prescribe it - well, I say they are not as it has never been suggested I can be prescribed it. Also I am unemployed and I'm not too keen on the idea of spending a lot of money on NDT/T3.

    Another thing - my FT3 result looks ok and I seem to be converting well, so does that mean T3 or NDT might still work for me if I can convert?

    Jo xxx

  • In my opinion and it is just my opinion, they still might work. I don't think that my mum and I have conversion problems and yet we feel much better with T3.

    A healthy thyroid produces not only T4 but also a small amount of T3.

    I suppose you won't know for sure unless you decide to try them. For many people it is a trial and error.

    I know how hard it is financially when you're unemployed. I don't work either as I had been forced to give up work because of how ill I was. But unfortunately most NHS doctors won't prescribe T3 or NDT.

    I am not saying that you should try T3 or NDT, I just wanted to give you an idea of something to perhaps think about if you find yourself still having symptoms that point to hypo.

  • Hi Jow11, thanks for your reply.

    I appreciate your help with this. :)

    Yes, I was forced to give up work due to how ill I was. I currently have claimed through ATOS but I don't know if they're very good with thyroid related illnesses.

    Jo xxx

  • Hi Jo-

    Have you heard from your endo yet? If it was Friday she first rang I would think about chasing it again.

    I think in the meantime you should restart your meds again- you don't want to make yourself feel any worse. x

  • Hi Friz42, thanks for your reply.

    No, I have not heard from my Endo as of yet. She left me a message and her secretary has said she is busy. I will have to try again later.

    I am looking to restart my meds.

    Jo xxx

  • Jo, your elevated antibodies attest to autoimmune thyroiditis (Hashimoto's) and goiter is sometimes part of the package and sometimes not.

    Are you sure your endo is saying you don't have thyroiditis? Or is she saying she doubts all of your symptoms are thyroid related?

    Get your vitD to optimal (it took 10 weeks for me) and that's one thing that can then be dismissed as symptomatic.

  • Before I have my say on this I would like to say...please Jo don't take these replies along with mine as as attack. We are all concerned for you and are giving our opinions on the matter.

    Like everyone else I fail to see why you would stop taking your medication. Why are you so fixated on proving you have a goiter? What difference does it make? The doctors aren't dismissing you. As you have Hashi - and there is no disputing that whether you have a goiter or not...the level of antibodies that you have confirm it - your thyroid is pretty much going through hell. By stopping the meds you are putting it through even more strain. The medication is there to help it stabilize which we all know can be tricky when you have Hashi but it often does help and stopping it is just going to mess things up for you. Your antibodies will go up again, your tsh will be all over the place and that is possibly why the endo wants to speak to you. There have been a few of us who have wished for our tsh to go higher or for a goiter to show because we are still in limbo,not being listened to and when you feel like crap and you know in your heart that there is something wrong you just want something that will make the doctor go "ah yes, classic case of..." and finally put you on that medication that your body needs.

    I'm also confused on dates. On this thread healthunlocked.com/thyroidu... in your reply to Rosetrees you say:

    Dec 2013

    Anti-TPO - 41,000 (<34)

    TSH - 4.6 (0.27-4.2)

    FT4 - 15.6 (12-22)

    Thyroxine not increased - stopped taking them.

    If you stopped your meds 2 months ago it would explain how you have been feeling lately. Please don't take this the wrong way but you seem very on edge and anxious and I worry that your health is going to deteriorate even further. Do your GP and endo know you have stopped?

    Please take care of yourself Jo.like pennyrose said...be kinder to your body, help it heal,don't try to make it worse!

  • Hi Chihiro, thanks for your reply.

    My last practice dismissed me and refused to test my thyroid anymore.

    Sorry, I did restart my thyroxine and then stopped it again hence the date mix-up.

    My GP and Endo do not know I have stopped, no.

    Jo xxx

  • Well that explains it even further...stopping and restarting and the stopping again is just going to send your body in a world of confusion LOL Take your meds Jo,they have been prescribed for a reason. Unless you go hyper there is no reason to stop them again.

    I know you were wondering why your meds hadn't been increased in December. Perhaps they just want to see what the next results show before taking that step. With the levels swinging due to autoimmune disease (hashi) increasing and lowering your meds at each check might be not be a good idea...at least that is what I have read. I wish I knew where I read it but I know I did somewhere at some point.


  • Hi Chihiro thanks for your reply.

    In part as well as the other reasons, I stopped and restarted as I knew that Hashi's is a lifelong illness and I read that Levo needs to be taken for life. But once the thyroid levels have stabilised that made me think that the GP then stops the medication and that would be the end of it.

    Jo xxx

  • Do go back on your meds. There's no reason why you can't work on upping your Adrenal and Vit D levels whilst on them. Getting those right may make you feel much better. But can't do if you've abandoned your thyroid to its own devices in the meantime.

    As others have said - we're not attacking your position; rather, we want you to feel better - and as quickly as possible.

  • Hi Humphrey, thanks for your reply.

    I understand no one is attacking my position. :) I will restart the meds.

    Jo xxx

  • Hi Jo

    One or two things that I think that I can help you with :-)

    Your endo isn't saying that you don't have hashimoto's when she says primary hypo in the letter. Hashimoto's is a primary hypothyroidism, that is it is a result of a problem directly with the thyroid (compared to secondary hypothyroidism which can be pituitary or hypothalamus issues).

    Also, perhaps she is stressing the need for vitamin d supplementation when she indicates that some of your symptoms are related to vitamin d deficiency? I know I read on here every day about the importance of vit d, iron and b12 in ensuring that thyroid meds work at their very best...

    I hope that you get in touch with her soon, but please don't risk your health by trying to prove that you have a goitre through stopping your meds. You felt that the swelling was there a couple of weeks ago, when you were taking your meds (I think), so there is no real logic to stopping them now.

    Take care.


  • Hi Parksie7, thanks for your reply.

    At the end of the report she has put "I believe her symptoms are due to Vitamin D deficiency and with treatment it can take up to six months to improve."

    Jo xxx

  • Has your GP prescribed vitD, Jo? S/he should if you are deficient.

  • Hi Clutter,

    My GP did prescribe me Vitamin D back in December but she requested I stop due to my levels not being horrendously low. However I spoke to her at my appointment today regarding my blood test results (which the practice do not have as they have gone to the hospital) she looked at what my Endo wrote and has said for me to restart them. I do still have the Vit D spray and have been using it anyway however.

    Jo xxx

  • I cant comment too much on your situation, others on here are more qualified, but I can tell you that I waited 3 months for an ultrasound appointment after my GP referral. Hopefully, you won't have to wait that long, but you may have to be patient.

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