Moral support

Hi all,

I have just booked myself a private endo appointment for next week & I am starting to doubt myself so was just looking for a bit of moral support really that I'm doing the right thing!

I am hypothyroid and on 100mg of Levothyroxine, which I have been taking for just over a year now. It was a struggle to get the diagnosis tbh and at first I felt loads better but now I'm not so sure. My first couple of blood tests after starting on it showed my TSH as down under 1, ideal from what I understand. One of the main symptoms I went originally for was back/neck pain & after loads of pointless Physio they finally sent me for an X-ray & diagnosed mild scoliosis & arthritis in my neck. I thought that the symptoms for this might improve with my thyroid being under control but they never have & if anything feel worse lately (along with some other symptoms returning) so I returned to my GP who was very dismissive (again!), pretty much saying that I just have to live with it, but offered me more Physio & pain killers (which I don't really want) & also tested my vitamin d & thyroid again. My vitamin d level was previously very low & I had been taking supplements.

So my results showed that vitamin d was high so I could stop taking those but my TSH is back up to 4.7. I figured that as I was feeling better earlier this year with it lower, the dr might be sympathetic to a slight increase in my dosage. But no, I just got the "you're within normal ranges" speech 😞 Whatever happened to treating the patients symptoms?

So now I'm taking the plunge & going to see an endo privately, which I will have to self fund as my insurance won't cover me without a gp referral, & I'm starting to worry that I'll get the same treatment & it'll be a massive waste of time & money?!

I'm doing the right thing tho right...?!

πŸ˜•

41 Replies

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  • your GP has no right to refuse you a private referral to an endo and in fact its rare to even be able to see consultants without a GP referral

    sadly neck problems do accompany hypothyroid but your TSH should be below 1 and your free t4 and free T3 both in balance in UPPER quadrant of their ranges

    ferritin

    folate

    b12

    vit d3

    must all be halfway in their ranges otherwise your body simply cannot tilise levothyroxine

    I do know that for my husband,daughter and 3 of the 4 hypothyroid granddaughters only NDT frees them of the joint problems and pain they would be in on levo or t3

    if you go ahead with seeing an endo make very sure he is recommended by all on here otherwise your money would be better spent buying NDT online and self treating

  • Thanks for your reply... a valid point, I was feeling at the end of my tether when I booked it, but I should have checked if he's any good first I suppose or it may well be a waste of time.

    I have had vitamin levels checked at various points & d was the only one there was a problem with.

    I was wondering about NDT... I don't know anything about it tho, more research required!

  • Hi Pawnstar - sorry you are having such a problem with your GP. Others have given you excellent advice and support. I just wanted to ask what the results were of your so called OK vitamin results - the ones where there was only a problem with the VitD ? How much D3 are you taking ? Also what were the results of your Ferritin - B12 - Iron - and Folate ?

    I found optimizing my thyroid treatment was only second to optimizing B12 and VitD. I could not believe the difference. Although in hindsight I possibly was not on a high enough dose of T4. Now T3 only.

    I would definitely stay with this forum for advice - I have read about too many people who are disappointed with their Endos - although yours sounds as if he could be good. Just hope he hasn't been nobbled by those nasty little people who lay down the Guidelines.

  • Hi Marz... Just dug out all my results. Doesn't look like Ferritin was done but the rest were as follows:

    Folate - 11.5 (2-11.5)

    B12 - 250 (211-911)

    Guess that could've been higher??

    Iron - 15 (7-32)

    Cortisol 565 (9am 140-690)

    Vit D - 68 (75-200)

    I was put on 800iu gel caps 2-3 per day and then it was reduced to 1 per day.

    Interestingly my latest Vit D test was only 70 but the ranges seem to have changed. Previously it said 30-74 was borderline deficiency and now it says greater than 50 is sufficient for almost the whole population & they've told me to stop taking it. I'm thinking that maybe I should keep taking them now tho πŸ˜•

  • OK Pawnstar - yes the Folate is good - which is unusual when the B12 is so low. Your B12 is VERY low - just bumping along the bottom. It needs to be around 1000 to prevent cognitive decline and around 500 to prevent neurological damage. Docs do not understand that B12 deficiency if neglected becomes a neurological condition.

    b12deficiency.info/signs-an...

    Scroll down and you will see the signs and symptoms.

    You will also read that the range in Japan starts at 500 and goes up to 1300. I know it is a lot to read - so take it slowly - bit by bit.

    Regarding the VitD - if the measurement was in nmol/L - then divide that by 2.5 and then look at the chart I have linked below. I make that 27 - so you need to be taking at least 3000 IU's daily. Things have moved on in the world of VitD and in the US it has been acknowledged that the advice has been on the low side. VitD is an anti-inflammatory steroidal pre-hormone and needed in almost every cell of your body - just like T3.

    grassroothealth.net

    VITD needs to be taken with good fats as it is fat soluble and also add in VitK2 to ensure your calcium goes to the bones and teeth. D improves the absorption of calcium in the gut.

    I would be asking your Doc as to why your B12 is so low. Is it an absorption issue - low acid ? - PA ? You need to supplement and I would suggest Jarrow Methylcobalamin 5000mcg. Place lozenge under the tongue until dissolved to avoid any gut issues. Once supplementing - any further testing is pointless as the results will be skewed.

    Good luck ! I am not a medic - just click onto my name to read my edited Profile :-)

    I have lost count of the times today I have replied about B12 and VitD.....

  • Yikes... Looks like I have a load more research to do.

    Thank you so much for taking the time to reply.

    I'm wondering whether I should just supplement myself of go back to the doctors to get tested again as those results were from about a year ago πŸ˜•

    I currently can't bear the thought of going back to the doctors, think I'll just bring it up with the endo next week 😏

  • Not sure the Endo will be much help when it comes to supplements. They do NOT receive training on vitamins and minerals/nutrition at Medical School. It's all about drugs acting as a sledgehammer to symptoms rather than deal with the underlying cause.

    You could easily supplement yourself. No Doc has ever suggested I supplement anything - I have just read and learnt from others who are wiser than me. There is an on-line series of movies at the moment about vits and minerals - from David Saul. Very good.

    Am afraid our health is in our hands and we have to take responsibility.

  • Totally agree. It is amazing how many people still believe that doctors know everything about the body and how it works. They have no training in nutrition or preventative health care. My mother was told to eat lots of red meat, one of the most stupid bits of so called health advice one could get. Red meat is bad for you. Yet because a (stupid) doctor said it to her she does not question him and obeys - like a zombie. Think for yourself. You now have a computer and google where you can quickly and easily check out all of these things yourself. Many naturopaths and nutritionists have gone out of business because people can now work out their own healthy diets and do not need to pay them for their advice.

  • Hi. How long did it take you for wit D level to level out? I'm on 20000 wit d 3 times a week.....have been on it for 2 weeks now....

  • Oh gosh - can't remember ! A lot longer than 2 weeks that is for sure. Has it been suggested when you have a re-test ? Usually a good idea to do it at the end of the winter.

    I have been on big dose D for 4 years - in spite of living in the sun. Are you taking K2 along with the D3 ?

    Am sure you could reduce to 10,000 IU's after a month or so.

  • Thanks.no, I'm not taking K2...should I?? What were your symptoms of wit d deficiency? I'm tired, palpitations, anxious 😩 not sleeping too well......

  • Yes you should take K2 as you are taking large doses of VitD - which increases the uptake of calcium from foods within the gut. Too much calcium in the blood stream is not good for the heart or other soft tissues. K2 ensures calcium is directed to your bones and teeth !

    My VitD was measured so I knew I was deficient. I have also had Gut TB and have Crohns - both linked to Low D. You can read my edited profile by clicking onto my name :-)

    Fatigue and palpitations can be due to so many things. have you had your Iron - Ferritin - Folate - B12 tested ? What are your Thyroid levels - with ranges ?

    Adrenals ?

  • My thyroid levels

    -tsh 2.00 (0.27-4.20)

    -ft4 20.6 (12-22)

    Ft3 3.9 (3.5-6.5)

    Cortisol 379(130-580)

    Vit d 39 nmol/L (50-174 nmol)

  • VitD on the floor - converts to 15.6 ng/L. Check out the website below to see the dose you should be taking....at least 5000IU's in my non medical opinion.

    grassrootshealth.net

    FT3 looks low - are you converting the FT4 dose into the ACTIVE T3 ? How much T4 are you taking ?

    What are your levels of Ferritin - folate - B12 ????

  • Hi,

    I am taking 100 thyroxine.....should I increase it???

    I havent checked my ferritin-folate-B12.....

  • I would certainly check the Ferritin - Folate and B12 as they are involved in the conversion of T4 into the Active thyroid hormone T3. Your T4 result is good and the T3 quite low in range - so it could be that you are not converting well. This is why I suggest you have the above mentioned tests done.

    Did you look at the VitD link I gave you ?

  • Thank you, yes I looked at it! Amazing! I will get those tested as soon as....

  • You really need some feedback on your private Endo, you can name him on here and ask for replies via PM.

    Your GP is not a specialist in thyroid disorders so has no right to refuse you an NHS Endo appointment. I had to write a formal letter of complaint to the Practice Manager stating that the GP had done nothing to help me regain my health and I wanted an appointment with an NHS Endo of my choosing.

    GPs are revalidated every 5 years which means that they don't want complaints hanging around on their file. It's our only weapon I'm afraid.

  • Thanks for taking the time to reply... I'll start a new thread to ask for feedback on the endo. Wish I'd thought of that before booking!

    I guess I could have seen another GP or tried to insist on an endo referral but tbh I just felt like I was banging my head against a brick wall. The last two encounters with my GPs have left me in tears afterwards. I feel angry that I will have to pay for it myself (especially as I have private cover that I already pay a monthly fee for!) but at the same time it seems better than having to deal with them & argue about it & walking out feeling humiliated & upset πŸ˜•

    I have spent a small fortune on osteopath/ sports therapist appointments as well as gym memberships/Personal trainer sessions to try to strengthen muscles & alleviate some of my pains... What's another Β£175 in the scheme of things for a bit of peace of mind?

    I just refuse to believe that a 37 year old should feel so old & decrepit & achey every day of their lives!

  • Re Endo Feedback you have to request a Private Message to be sent to you as we don't publish on the open forum. You can put the Endos name or ask for recommendations around your area.

  • Thanks, understood.

    I just remembered that I emailed Louise Warvill ages ago for the list of recommended Endos & he is indeed on it.

    It says that he has prescribed combination T4/T3 and Armour and that he has pioneered new approaches to thyroid management in Medway.

    Well that sounds promising?! 😏

  • Yes it does. Excellent.

  • We all understand and sympathise but the NHS is failing many of us so we need to be pro-active.

    I would also strongly recommend that you obtain a copy of your medical records, you're legally entitled to these although there will be a charge . Details here:

    nhs.uk/chq/Pages/1309.aspx?...

  • I would wait a while before seeing a private endocrinologist - you are hypo and need optimum treatment, even if it means educating your doctor.

    The first thing I would do is sack your doctor as he is in the wrong profession. He is actually making your symptoms far worse by too low a dose.

    His dismissive attitude to a sick patient who is looking for him to be the 'expert' is appalling.

    He has completely ignored your plea that you aren't feeling well with more symptoms appearing.

    He is very uneducated about the function of the thyroid gland and it's no wonder some people think it would be good if, for a while, the shoe was on the other foot and these doctors actually experienced the uncertainty of remaining either undiagnosed or prescribed such a low dose of thyroid hormones to keep the TSH 'in range' when in fact we should have a TSH of around 1 or lower or suppressed with the alleviation of symptoms.

    First I would email louise.warvill@thyroiduk.org for a copy of the Pulse Online article by Dr Toft and highlight question 6 where it informs your doctor how low your TSH can be. Tell him if he causes you to develop other problems i.e. heart etc it will not be your fault.

    I would post a copy of that article to your doctor informing him that Dr T has been President of the British Thyroid Association and you want to increase your levo so that you become well and not remain unwell due to his stance and there's something far wrong with his training if you have to search the internet for information and advice. We have all contributed towards the training of doctors so when unwell we expect them to have more knowledge than us, the patient.

    It also gives him time to read and search the internet himself :) He can even become a member of this forum!

    If nothing is forthcoming from him enclose the following letter which has gone before the Scottish Parliament in the Petition they have before from Lorraine Cleaver. Both consquences which were absolutely unnecessary and awful.

    tpauk.com/forum/resources/j...

    thyroidnation.com/fighting-...

  • That sounds like a battle for a day when I can think straight (ie not today!! 😏)

  • Not all joint pain etc is attributable to being hypo. I broke my back in an auto accident years ago and the only things conventional medicine could offer at the time was fusion surgery, opiates and muscle relaxers. Thus began my journey into the world of alternatives and 'natural' remedies. When my back acts up (rarely now), I don't assume it is the fault of my thyroid meds.

    .

    You were dx with arthritis/scoliosis ... perfectly legitimate reasons for your pain and discomfort in that area, reasons that a thyroid protocol might have no effect on, even if your thyroid treatment is optimal.

    Some options for joint/arthritis pain relief.. biomagnets, dmso (a superior pain reliever), hyaluronic acid caps, shark cartilage (one of the best anti-inflammatories) and 'earthing'. For mild, temporary pain relief, Arnicare gel can be helpful. You can read reviews of these various products on Amazon UK, Amazon USA, Vitacost, Swansons etc. except for the biomagnets. Don't use the magnets off your fridge..lol... Educate yourself on the use of therapeutic magnets if you go that route.

    Do research/consider taking K2 with your D3 in order to ensure that the calcium that you ingest doesn't get deposited in your arteries and soft tissues and instead, gets to your bones/skeleton.

  • Thanks... Yes I do appreciate that the two things are not necessarily related. But one could certainly exacerbate the other & possibly even have caused it in the first place from what I understand?!

    My back/neck issues were what drew my attention to the thyroid problem, although in retrospect I was feeling tired & unwell long before that. The two things seem to have gone hand in hand so my assumption is that I need to make sure that my thyroid is treated optimally before I can move on to other things and I will certainly look into the things that you suggest. Thank you 😊

    I was having some Physio treatment around the time that I was diagnosed last year & they pretty much told me not to bother coming back until my thyroid was treated so I don't want to waste my time (or theirs) with another Physio referral until I'm sure that my thyroid is as good as it gets 😏

  • So, they tell you to suffer until your thyroid is optimal? Does that even make sense? Physio can be helpful as I found out when I broke my shoulder back in year 2000 and have made a full recovery but.. some things physio just can't help with.

    Scoliosis means you have a curvature of the spine. How is physio going to cure that except by helping to build up your muscle strength?

    Muscles are supposed to take the strain and stress of movement, not our skeleton/spine So that can be helpful to a point.

    I am sorry. I don't mean to sound argumentative... just hate, hate, to see people suffer with pain needlessly if there are viable, relatively harmless alternatives available.

    I was only 25 yrs old when I had my back injury (cracked vertebrae), some thirty years before my hypo dx. I was put on synthroid (t4) for a year and the bone pain, depression and profound exhaustion that I experienced until I discovered Armour was almost unendurable. So.... I know what hypo pain feels like. Like so many folks, I have had broken bones, surgeries, child birth and ..... thyroid pain is like no other. It seems to radiate from the bones out; hard to describe.

  • Well I wasn't overly enamoured with the idea of more Physio tbh... The NHS Physio signed me off without making any progress whatsoever three sessions after diagnosing the scoliosis & arthritis. They pretty much dismissed it because it's quite a mild case. So I went private & they told me to get my thyroid sorted.

    The main reason for trying Physio again was at the suggestion of a sports therapist - she recommended getting an mri to rule out any nerve involvement but couldn't actually refer me herself.

    I feel like it may be thyroid pain as I really can't put my finger on what's actually hurting most of the time & it's really bad in the morning & eases as the fogginess clears towards the evening. Some days it just feels like my spine hurts & that's about all I can describe it as πŸ˜•

  • If the therapist just 'guessed' that you had arthritis/scoliosis, yes... an MRI would be definitive, maybe even just an xray? The scoliosis would definitely show up on an xray. Even a bone scan test would show up irregularities. When I saw mine, my spine had more twists and turns than a country road...lol.

    You have a lot of nerve endings in the neck/spinal area so the pain could feel fleeting or floating at times. I am not discounting that your thyroid could be the cause of the pain, but... trying some other therapy might prove helpful? Does ibuprophen (like Advil) help relieve it at all? Ibuprophen helps mine a little.

  • No she wasn't guessing, I had an X-ray courtesy of the NHS a couple of years ago... They diagnosed & then left me to it basically. Told me I just need to find what works for me... Well so far nothing has helped - yoga, Pilates, acupuncture, circuits, core, doing nothing, kickboxing, osteopath! Latest in the list was the sports therapist & she was merely concerned that there was nerve impingement based on what I told her. Pretty much said "you've been fobbed off mate" go back to the GP.

    Ibuprofen helps a little but the GP didn't want me taking it regularly, she prescribed ibuprofen gel... Great idea, in practice I would be literally smothering my whole back with it tho?!

    I suppose

  • Yes.. the ibuprophen gel works short term and saves your tummy. Do check out some of those other things, especially the dmso. If you truly have nerve impingement (a nerve being pinched) surgery may be your only option down the road.

    Magnets are great. I have used them for twenty years or more. These are the only ones that I trust. They are very strong for their size and have negative (preferred) and positive fields clearly marked. The negative polar position is healing and pain relieving.

    biomagscience.net/about/wil...

    One of those cracked vertebrae was at the nape of my neck. I hated to go to the hairdresser's ... so painful to be in the wash bowl. She would have to lift my head for me. I wore the biomags at the nape of my neck off and on for a year and , on my last visit to get my hair done, both my hairdresser and me were half way back to the regular chair (after getting my head washed and rinsed) when we looked at each other and realized that I had no pain. I hadn't needed her help at all !! I was shocked but thrilled. Supposedly, we can build up calcium deposits in our spine, especially when injured, and the magnets can slowly help to dissolve these deposits. I guess that is what happened to me.

    Earthing is another protocol that doesn't involve ingesting anything and often resolves nagy pains. Castor oil packs, tho messy, are a relatively inexpensive way to go also. I have used them all... I hope you find something that works for you, my friend.

  • Ibuprofen gel, unfortunately, doesn't always save your belly.

    When I was using it for epicondylitis (which I now believe was associated with hypothyroidism), I fairly suddenly started to get very unpleasant feeling in my stomach. Looking up about it, I found that the ibuprofen affects the stomach even if it is applied on the skin.

    Stopped using it at all and stomach issues resolved. Occasional use might be OK - but regular use seems to get to some people.

    medicines.org.uk/emc/medici...

  • Wow, I've had that problem too at the hairdressers, that's exactly where I have pain. Sounds like I should defo look into the magnets. Thanks again for the suggestions 😊

  • Just one last comment. Be very careful with magnets. They are easy to use (except for getting stuck to metal things like your fridge or washing machine...lol..)

    but.. you only want to use a quality product and the negative side and one that has a definite polarity. I gave you the link above. Please keep me posted, okay? And any questions, just give me a holler.

  • Phoenix23002 , I have just read your recommendation for arthritic pain relief, my husband, no thyroid problems, but has been taking a strong anti inflammatory for years for his back problems, he had 2 discs removed and still has a lot of pain, hes pre diabetic and just found out his kidney function levels have dropped quite a lot, GP has taken him off anti inflammatory pills which could have been the cause. your information has helped, as I can now look for alternative pain relief. Thank you very much!

  • Hi, Beverley, So sorry about your husband. My hubby had sepsis last year and the strong drugs they gave him to save his life almost destroyed his liver and kidneys so we have to be careful with his diet and meds.

    Do look into buying the book "Entering The Zone' by Dr. Barry Sears. It is just a way of eating that keeps one's blood sugar from spiking. and might be helpful with your husband's pre-diabetic condition. Your hubby can eat whatever he wants as long as it is properly balanced with proteins and carbs and fats. Even with my husband's impaired kidneys/liver, I still give him benfotiamine and chromium picolonate. These can help with blood sugar.

    It sounds like your hubby had spinal fusion maybe? Did the anti-inflammatories that he took previously help his pain? I was trying to think of a favorite among my pain relievers that I would pick out over another and I can't. I guess whichever one works .. trial and error. Earthing is terrific and so is dmso and the magnets. Good luck and if you have any questions, don't hesitate to get in touch with me. :)

  • Hi phoenix23002 , thank you for replying. You and your husband have been through an awful lot. How do you cope?

    My husband didn't have spinal fusion, he had two discs removed about 4 years apart. He has had endless nerve damage and other problems , including bladder problems. He takes Tramadol and has for years, its the only thing that helps with pain, it will be great to find alternative pain relief. I have made a note to buy the book you suggested, also made notes of the recommendations for pain relief. This will also help other members of my family. Thank you very much. Best wishes Bev.

  • Hi, Bev. How do I cope? By counting my blessings and thanking our good God. As bad as things are, they could always be worse... right? Good luck to you and hubby. He is fortunate to have you looking out for him.

  • Hi pawnstarr, I also was started on 100mg of levo, which initially started to make me feel better but I also had severe symptoms that just wouldn't go ie awful joint pain, terrible chest pain to the extent a couple of times I thought I was having a heart attack, hair loss, fatigue and memory problems etc the list goes on. I got so fed up with my doctor telling me that it was my age ( I'm 46 😐) , or I was depressed or it wasn't thyroid but something else, I took it in to my own hands. With help from these guys in the forum and lots of research I added T3 to my regime and cut back my T4 drastically, I'm pleased to say that the week before Christmas my joint pain stopped, my chest pain suddenly disappeared my hairs almost stopped falling out, my memory is getting better and my energy levels are so much better. Be strong and persistent, don't except your doctors word that you have to live with it, you don't!! You will get amazing help from the guys of this forum, so I know that eventually you will get better. Good luck

  • Wow... I'm totally blown away by the amount of replies & people taking the time to help. Thank you everyone 😊

    I've decided to suppliment as per suggestions... My b12 & k2 arrived this morning to go alongside the half tonne weight I already have of Vit d. I'm gonna hold off one more day tho & go to the end tomorrow as planned as he seems to be a recommended one. Will let you know how it goes 😊

    Thanks again!

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