This will make your hair curl - if you have any left.

Good Afternoon Terry,  I too am from St. Louis, MO and am desperately trying to find a doc who #1  Listen's to a patients symptoms, not basing EVERYTHING on bloodwork  and #2 will prescribe NDT.  Would you be willing to share the docs you mentioned in your post?  Any help you could offer me would so so helpful as I'm very very frustrated.  Thanks in advance!

Yep, fantastic medical plans, the very best that money can buy and her top flight doctor choses Armour!!! Yeah, let's here it for NDT.

No stinking Levo for a presidential candidate, if they did that she would be dysfunctional half the time, we can't have that for a VIP.

I hope this blows big pharma out of the water and gets more people on decent medication instead of the toxic junk they first gave me for two years.

Gosh, forgive me for being so emotional over this, it bothers me so much that so many of us "little people" are being left to suffer.

Two years!...I was on levothyroxine for 30! For all that time, feeling rubbish, trying to hold down a good job and raise a family - there just wasn't time to research thyroid as well.

By the way folks, if Armour doesn't suit you, try WP Throid (pig's thyroid) or ThyroGold (cow's thyroid) as neither contain fillers.

Nice to see you back online Barbara.

Thanks for the info.

Jean

There is also Thyroid-S which a lot of people get on with despite having fillers but it works out a lot cheaper. NDT is after all a food as it comes from pigs thyroids so food doesn't need a license, so without a license Dr's will not prescribe it in the UK. However there has been a lot in the news recently that patients are being prescribed gluten free cakes and biscuits on the NHS. Gluten free products are freely available in the UK, but NDT is not and both are classified as foods.

Just too how many patients have been prescribed antipsychotics along with their Levo to conceal that Levo is not helping.

Barbara

Sorry forgot to ask you but where can you get the NDT from without a prescription?

Jean

Go to where LAHs has mentioned and you will find that out by joining that forum.

Dear LAH:

I bet Hillary has NO co-payment either!  Maybe she was on LEVO when she deleted all of her  government e-mails....LOL.  Thanks for this post!

XO, Shelly

I bet she didn't have any problems getting her bloodworks done either!!

In my case  where I have a diagnosis of sub clinical hyperthyroidism and my signs and symptoms appear to fluctuate between hyper and hypo what treatment is available for the likes of me. A mere commoner.

 

Anti psy chotics probably exacerbating the condition as well. Big Pharma never lose out on anything!!!

Jean

Hi jean, and anyone else who has a goitre and multiple nodules on their thyroid, I would strongly advise AGAINST treatment with thyroid hormones. Throwing more hormones at something that is already producing too many of them is not a good idea.

I found evidence that an antipsychotic drug that I was put on for 13years which caused my weight to go up from 9st 7lb to a whopping 17st prevented T4 from changing to T3 which is the hormone that does the work and in turn I am sure it caused my breast cancer, but on complaining to the Ombudsman you get the same excuse that you are out of time, but evidence is coming up all the time which was not available in the past.

I have not been told that I have subclinical Hypothyroidism and one GP had told me it does not alter/fluctuate quick, but my present GP says the thyroid can fluctuate from HYPO to HYPER, but I think what happens is that the thyroid remains HYPO but when one has an infection the thyroid spews out hormones causing overactivity elsewhere in turn causing the heart to become irregular so I now stick to the same dose of NDT and dispence with the beta blocker as beta blockers lower the BP, but in turn so does AF cause the BP to fall and low BP causes me to feel ill. I have also stopped taking the low dose of Prednisolone as in turn it makes one vulnerable to infection.

My endo sirgeon just rang, yes I know it is Sunday but he is a private surgeon who wisd to an endo physician.

The twenty nodules found on USS of the thyroid on June 30 2915 are thought to contain fluid therefore no need for a biopsy, the sacs are thought to contain colloidalfluid and the largest is 0.3cms in size. The thyroid is slightly enlarged.

No treatment has been suggested!

No surgery suggested. Yet why should I suffer these horrendous signs and symptoms any longer?

I am a coward and feel unable to tolerate the muscular stiffness, ruptured tendons etc .

Jean

The nodules are thought to contain colloidal fluid , the largest being 0.3cmsin size. The thyroid is slightly enlarged.

My TSH was only 0.17, then 0.16, two weeks ago it was 0.047.

Endocrine Surgeon rang and said he is writing to my GP to get an irgent referral to a endocrine physician.I think he is just passing the buck.

For those who are wondering how much it costs in the UK to self medicate - ThyroGold costs me £22 per month. I'm taking 3x150mg capsules a day. It can be obtained without a prescription and is a 'proper' NDT (from cow's thyroid) . With self medication though comes the responsibility of working put for yourself what dose you need and daily monitoring of it's effects to check its the correct one.

Hi Barbara

Have you please got the link to the website where you buy this from.

Many thanks

Jean

As it doesn't sound like the nodules need operating on, referral back to an endocrinologist is the next logical step. It's goo that he's making it an urgent referral - you shouldn't have to wait too long.

Hi Barbara

I am wondering what his diagnosis of fluctuating Thyroiditis means and what the treatment is.

Wat caused the nodules in the first place?

Jean

Have I done my arithmatic right that it works out to £264 a year. If so I take 3grains of Thyroid-S a day and 1000x1grain works out at £40 a year.

If you purchase from USA in the UK you get clobbered with VAT but the post office add an additional handling charge of £8. This is not fair if patients in the UK are forced to purchase from countries like the USA. I cannot see that ThyroGold is available in the UK, but it does look like you have to take more of these ThyroGold capsules to make one grain of Thyroid-S or other porcine NDT.

Hello Jean & Barbara & LAH and all:

Many pills and even some insulin that is made from an animal, like  a pig, can't be patented.  This means it can be sold without a prescription.  So Armour Thyroid is made from a pig's gland and can't be held onto by the pharmaceutical companies.

Here is the bad side, any pills made or insulin that are made as biologicals can be on a forever patent and that means it will take about 17- 20 years before it can be generic.

I don't know what website has Armour but it could be googled.

I hope this helps. Shelly

To order ThyroGold if you live in the uk: there are two steps to it. (1) order the qty you want and pay, (2) print the international shipping form from the site, fill it in, then scan it and email it back. I've now placed 3 orders without a problem.

There are two main benefits to me of ThyroGold. Firstly, it doesn't contain fillers (I'm intolerant to them. Secondly, I didn't need a prescription, so I didn't have to find and pay a private endo to write me one. This was particularly important at the time as I had just become intolerant to levothyroxine and needed an alternative quickly. For some reason I have never had to pay the post iffice's £8 handling fee.

Dear Jean:

The nodules can come from a family trait (your DNA). Some people grow cysts  or nodules elsewhere in the body like the breasts and ovaries and adrenal glands.  Also the tissue in them can be dense which could be from an infection in the past. The tissue can be like scar tissue. 

As we age, cells in our bodies change and can go a bit haywire.  Sometimes the cells make a ball of cells and that can cause a small nodule.

Nodules are normally small but an ultrasound should be done and also a biopsy to test the cells in it.

The nodules can interfere with the thyroid gland and how it works.

I hope this helps,  Shelly

Hello Shelley

Thanks for this.

Three blood relatives had thyroid disorders. Not sure whether hypo or hyper.

The endo surgeon said that the nodues are sacs containng fluid and therefore biopsy is unecessary.

I feel so stresed out thatnI feel like giving up.

Jean

Hello Jean:

Fluid fiiled sac's are cysts mostly and the fluid can be drained by a doctor. Once drained it should heal.  the fluid should be looked at as to rule out any cancer cells.  Most are NOT cancerous.

Sometimes it is a family trait and you should tell any doctor you see about your relatives thyroid issues.  

Shelly

 

Hi Shelly

The endo surgeon refuses to do a biopsy. What shall I do?

He already knows about the thyroid problems in blood relatives.

ESR was normal.

I am frantic with worry. Cant sleep without having nightmares about these nodules and the peripheral neuropathy.

Antibiotics and other meds have truly messed my life up bigtime.

No one should ever have to suffer constant pain, burning of buttocks, backs of thijs and legs plus plantar faciitis.

Jean

Jean

Hi Jean:

For the pain, they have a procedure that works in most called a "nerve block" and it works well for some with sciatic type of pain.  A special doctor known as a rheumatologist can do it.  It may help you.

If they won't biopsy it they can at least drain your cysts. Keep trying until you get a doc who will help you. 

Get the pain sorted out first. Pain can drive you crazy. Ask your GP to refer you to a Rheumatologist. 

XO Shelly

Hi Jean:

Also see if your area has a pain management clinic or center.  Most places do and they do the nerve blocks there.  It shuts off the nerves, so the pain can't  come through.  My Grandmother had it done and she was fine after it.

XO,  Shelly

Hi Jean:

Glad he called you.  The fluid in a cyst is normally not cancerous. It seems like most are very small.  Cysts can be drained by a needle aspiration done by a trained MD.  The bad thing is that you have so many and it is causing you thyroid trouble.

If he can make a referal  to a doctor that can help you, that will be a step in the right direction. 

As to pain:  Please seek out a pain management center as they have Nerve Blocks and it may help you out.  Ask your GP about that.

XO, Shelly

If you want the links, post a reply saying so, and I'll send them to you by PM. I'm not connected to any company, I'm just a patient who appreciated someone else doing this for me when I became allergic/intolerant to synthetic thyroid meds and was desperate.

Thanks Shelly

Hi Barbara

Thanks for the info.

As you know I haav twenty nodules on the thyroid.

No biopsy as thought to be benign.

If the tsh is low and then becomes 'normal' of its own accord without treatment plus having the same signs and symptoms then should this condition be treated or just ignored.

What is the treatment for a 'fluctuating thyroiditis

How will the physicians know what to treat if the thyroid hirmones are fluctuating?

.

I am willing to try anything.

Jean

I agree with you!! I was diagnosed as Hypo and was prescribed Synthroid 50mcg (Levothyroxine) 2 months ago. I took the stupid pill religiously. and all of a sudden, I start getting breast pain, armpit pain which radiated down my right arm. I kept taking the stupid medicine and then developed shoulder and neck pain. It got to the point where it was unbearable. I called my Endo and he said "keep taking it until I see you again" -- you mean to tell me I have 1 more month of this crap?? I continued taking it for 3 more weeks and decided I was so done with this. I did my blood test 3 days ago. The day after my blood test, I stopped the medicine. I am on my second day without taking the meds and guess what?? PAIN IS GONE!! I called my doctor and told him what I did, and he said that he never heard of my symptoms being caused my Synthroid, but he is willing to switch me to Armour. I really hope it works. 

I was on Levothyroxine (T4) for years but also on Pimozide which is a Tranquiliser so clearly pain was concealed but I did have a lot more problems and numerous drugs. I ended up with Breast Cancer and incontinence, so decided to come off Pimozide and pain which they call Polymyalgia hit me and then through bad management had an electrolyte imbalance caused in turn by a polyp that filled the whole uterus caused in turn by Tamoxifen. I then went through seperation spending 3 months in a refuge and re-housed. I ended up being put on more tranquizers and more weight gain so eventually said no  more. After this like you I found that stopping the T4 pain went away, but eventually it did come back. Some years later on having by then had a TVT op and divorce and a new flat, I decided to try out NDT, but it meant stopping the T4 and pain subsided, until I had been  taking NDT for a bit, but in turn the pain came back. At this stage I sought advice from a Dr not in the NHS and switched to T3 only, but by then I had been put on Prednisolone as I had become housebound and not able to use my right arm. This too did not help as in trying to get off Prednisolone the ain in muscles and joints came back. I now take NDT only a different brand, but still cannot get off the Prednisolone. The difference in my case is that I now find the mesh TVT was in fact put in too tight and it has to be removed in a somewhat tricky surgery so do not know if the Polymyalgia is caused by the thyroid med or the TVT, but I can say it has helped on the correct dose the atrial fibrillation and lowers my BP. I no longer get any bad spells of Atrial fibrillation.

Armour may very well solve your symptoms. Do look up how to dose with NDT (see tpauk website) as you need to start with a low dose and increase it slowly so that your body can get usef to having T3. If you have a problem with Armour try WP Throid which doesn't have any fillers in it.

The website you mention had closed down, but whether they have yet re-opened a new one I don't know.

I got an email as I am registered on tpauk it said they were moving web providers.  It is still operating.  I have been on it since.

This is about the 4th website, but I left as I find this website better serves my needs and its quite good as it covers other health problems which can sometimes come in tandem with thyroid problems.

Hello Bianca:

Oh I had horrible trouble with Synthroid aka Levo. I suffered on it too and then my doctor saw my TSH was bad all the time and I went onto Armour Thyroid and it was great.  The only problem is I was not diagnosed until age 27 and I was 12 when I had feelings of being cold and constiaption and no doctor tested me back then in the 1970's. I just can't convert T4 into T3 to make it work, so now I am on Liothyronine only T3 and feel the best I have felt in my life. 

I have heard of people having all kinds of symptoms so you did the right thing and got off of it. 

Synthroid:  The symptoms I have heard run from eye pain to chest pain and horrible muscle pain on it, and cramps and loose bowels.  T4 effects the heart a lot, and let me know how you do on the Armour Thyroid.

Shelly

Thank you Shellyc19! I honestly believed I was going mad! I had to way my options seriously but thought that the pain I was experiencing from the meds was far worse. I look forward to trying the Armour. I pray that it works for me as it did for you! I have an appointment with the doc on monday. I didb my levels this past Monday but I haven't got a call with results. I'll give you an update.