New to the board!

Hi,

Had papillary thyroid cancer back in 2010. Removed and irradiated by Aug 2011. Im struggling with an edno who doesnt listen, and a GP who passes everything back to the Endo. All the treatments thus far have been awful. Ive suffered weight gain, lethargy and now tennis elbow in both arms. My joints ache and I have an 'odd' sensation similar to a fractured rib on my left side. Possibly the start of fibromyalgia, but the concept of joint pain and tendon sensitivity is alien to my Endo even though there's plenty of evidence to support this.

I finally got T3 prescribed after T4 made me just bloat up, a lot like water retention. Im now 'too high', according to my endo, who reduced my dose from 80mg to 60mg and have put on over a stone in a couple of months. Im going to see him Monday next week, is there any way I can explain to this guiy whats going on as when I tell him (as I have done time and again) he seems to think Im speaking an alien language.

I was lead to believe the op would be the risky bit and then, according to the Oncologist "I'd just have to take one tablet, like a sweetener, for the rest of you life, its as simple as that" Total rubbish. The op was a walk in the park compared to what Im going through. I feel as each day passes, Im slowly going down hill.

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  • Arh real_mission, I really feel for you, I have been where you are. I am sorry that you have felt unsupported by your doctors but you will find that is a common denominator in this or any other thyroid group. Are you new to this group? It is very likely that you are not converting your hormone or there is not enough hormone to convert. What was your T4 dose? Do you have recent blood test results to post including reference ranges? Is that 60mg of T3?.

    Hormone metabolism is complex, for thyroid hormone to work and convert you need to have good levels of ferritin, B12,folate, selenium, magnesium, zinc etc so first of all you must get these checked. The doctors do 'feed us' a load of rubbish, I was told that too about the little tablet...how wrong they are. You will need to take your health in your own hands because it is very likely that the medics will not. The trouble with thyroid cancer is obviously they want to remove the cancer but when that is done - you will become like any other thyroid patient...NEGLECTED but obviously live with the prospect of cancer recurrence. Please post your results if you have them. There is a wealth of information on this site and we are all trying to achieve better health and ...it can be done.

  • Hi sorrel89,

    Exactly how I feel. Ive been on Macmillain years ago ,but the general consensus was 'Pull your socks up' I felt as though I was talking to a nurse rather than a fellow cancer patient. It kind of put me off forums for a bit as no one seemed to be talking about the symptoms I've discussed. Untill recently, there seems to be ever more people posting the same results. T4 I was on 150mg, Im also slightly lactose intolerant (again, ever since the op) so I told the Endo and GP, they said the tablet isnt made of milk, then I pointed out the cellulose fillers, and they said 'oh' and ignored it again. My level last time was 9 on T3, slightly over, but I felt normal, its been high beofe and I managed to keep my dose up, this time he reduced it by 25% and Ive put on a stone and a half.

  • It may also help to have a VitD test if your GP is not watching the costs ! Being LOW can be the cause of pain in the muscles and joints. You need to be at the TOP of the range to feel good. It is also anti-inflammatory and is a steroidal pre-hormone. I have lived in Crete for years but still tested low in the range - possibly due to the Hashimotos and other chronic conditions. Do hope you feel better soon..... I also read recently that anaesthetics destroy B12 - where I read it I do not know :-)

  • Hi Marz,

    Unfortunately, my GP watches the purse string like a hawk .I had tpo have a steroid cream. It took two courses of inappropriate cream and a referral to a consultant before I got the right stuff. The consultant explained the reason it took so long was Gp's tend to refer as the cream is £70 a tube. I said I'd have paid him cash for if if it had saved me six months of messing about.

    Oddly enough, I do feel better when I took supplements, I take a 'one a day' tablet, but noticed a marked difference when I took separate B complex and a magnesium/zinc tablet. Will give that a try again. Currently taking 'Yakult' as my intestines have been very odd since treatment. I feel better on that too, but return to usual after a few months.

  • Better to take B12 VitD as individual pills. You didn't say if you have had the VitD test done ??

    Yakult may help but you need to eat LOADS daily for the micro-flora in the gut to find a balance. Kefir ? Fermented Veg ? Gluten free ? Alkaline foods ?...all these things may help...... Private VitD test is not expensive. Type VitD Test into the Search box and you should be able to read loads. Also there is the information on the main Thyroid UK website....

  • Ah! Thought as much .No chance of a VitD test as my GP is a scrooge :) . I didn't even know VitD played an essential part of treatment.

  • Also prevents other illnesses - vitamindcouncil.org

  • Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency.

    ncbi.nlm.nih.gov/pubmed/825...

    And another link...

    thelancet.com/journals/lanc...

    There are several references on this subject at the bottom of the second link.

    It is specifically nitrous oxide being used during anaesthetic that causes problems. I have no knowledge of how likely it is to be used though.

  • thyroiduk.org.uk/tuk/relate...

    Just found an excellent link courtesy of this site. I'll arm myself with words. Basically what I've been telling him all along, but its written down and by a GP, so he will obviously actually listen this time. If it actually goes in, well that's another thing :D

  • You can get a vitamin d test done for £25 by the nhs lab in Birmingham. You do it all by post and they only need you to provide a drop of blood. Here is the link....http://www.vitamindtest.org.uk/

    G x

  • Many thanks! 8) So much forward thinking info on here. Amazing how much Thyroid work has come forward since I had my first op. Only two years ago, suggesting Amour as an effective treatment would have been heresy! :) Glad we are becoming more progressive, as I keep telling my doctor, it wont be growing back soon ,so if my levels are not right I'll just keep getting worse.

  • I'd just like to say a big thanks to the forum! I downloaded Dr Lowes paper on fibromyalgia and handed it to the Endo with an explanation. I then went into the possibility vitamin 'd' deficiency, he looked at my charts and said 'well, you were low the last time at 30' I asked 'when that was taken?' just after thyroid removal!! So he has ordered a test. He also mentioned that I was low.......low for the last 3 months. I've asked my GP to up the dose in the mean time, as I knew I was way down. He said he couldnt as 'he'd get a nasty letter from the consultant' .Whereas. I explained this to the Oncologist last time, and he nearly blew a fuse saying GP:'s were lazy and we well within their remit to do it. Everyone seems to have a good excuses, but no one seems to have a solution. Im glad I armed myself with some facts prior to going, hopefully this will begin to move things in the right direction and I'll begin to feel like my old self again!

    Thanks all, I'll be on the boards reading up over the next few weeks. Its a mine of info the Endo seems to not know of :)

  • Hi real_mission and others,

    Glad to hear you're on the mend. I had a total thyroidectomy in 2010 for Papillary Carcinoma and the R-131as well. After progressing from 100mcg of Synthroid up to 175mcg and still feeling crappy, I was lucky to be referred by a friend to a Naturopathic Medical Doctor, NMD. It was all cash pay, but worth it.

    I experienced and learned a lot of things that are interrelated that may help you and others on here. I originally found this site while researching if I can get Armour and either Cytomel or Cynomel in Italy or elsewhere in Europe.

    I saw your post and felt compelled to share some info. I did a quick sweep of the topics to make sure it wasn't overly redundant, so my apologies if so. Also, it may not apply to everyone, so please do further research from multiple sources, as opinions do differ-and don't rely on your GP or endo to understand or agree with you unless they are extremely enlightened and willing to practice outside of traditional guidelines.

    I am currently in the US and was a pharmaceutical and medical device sales rep for 10 years. I didn't sell thyroid meds, but I have to take them now forever, so luckily I have the foundation to really analyze and be skeptical from the molecular level, side effects, cost, insurance and practice guidelines.

    After ditching my highly recommended endo for my renegade, cash only Naturopathic Doctor, I found out there are a few more thyroid labs that are not standard practice, yet are usually more indicative of total thyroid, including adrenal involvement in the feedback loop.

    I believe someone mentioned this site in another post, but I was referred to it by my doctor and recommend it as a reference to learn more about how there's more to thyroid than traditional doctors are trained on, unfortunately, and that other systems, such as the adrenals and GI are interrelated.

    stopthethyroidmadness.com

    It sounds quacky, but it's worth investing some time.

    Synthroid which is straight T4 (storage hormone) didn't work for me because I wasn't converting it. T4 is supposed to convert to T3 (active hormone). It is not uncommon.

    The test for that is called Reverse T3.

    It is not standard, but it exists even if is not pre-printed on a lab requisition slip (if you have those in UK and Europe). You can find out what lab company will be testing your blood and call them for the specific test number code and inquire about cost, as it may not be covered. stopthethyroidmadness.com/r...

    In addition to the TSH and T4 Total and T3 Total they will likely run, you also need T4 Free and T3 Free- my physician said the Reverse T3 and the T3 Free were most important to him followed by the others.

    Those with Hashimotos can sometimes have this problem too.

    Adrenal Fatigue, which isn't even acknowledged by many mainstream practitioners is very real and measurable. It is part of the endocrine system which consists of feedback loops.

    I had issues with my HPA Axis- Hypothalamus-Pituitary-Adrenal. Remember, TSH is produced by the pituitary.

    There are different types of tests, I did a saliva panel which measured my daily flux in cortisol. I had severely depressed cortisol at the first morning interval (6-8 am) when it is actually supposed to be at its highest.

    The problem with serum (blood) tests I was told is that they only take a snap shot reading at that particular moment in time.

    The hormones we're talking about operate on a 24 hour feedback loop- which is why you're supposed to take your thyroid meds or birth control (for a hormone pill comparison) at the same time each day.

    For regular doctors and insurance, the opinion will be that the saliva tests either haven't been sufficiently tested long term for validity, the cost, etc, etc. Most practice guidelines are 17 years behind the advances in technology..... I'll find the link to that article later, if anyone's dying to read it.

    Not trying to bash or go off topic, I understand the frustration when you feel like you can't get resolution or no one can help you-and especially if you finally find the right medication, but you can't get it anymore!

    So for "resetting" my adrenals and weight gain, I did one round of the Hcg injections/diet protocol and topical testosterone. Again, a little controversial and paid out of pocket, but it worked and it was hell. I lost 22 pounds (about 10 kilograms?) and kept it off.

    My GI tract was a train wreck as well. I always had issues with dairy, so I just don't do it at all.

    A year before my thyroidectomy, my appendix ruptured. After that surgery I still had the same symptoms.

    I did a Total GI Panel with the same company as the Saliva Panel. I had to collect 3 different stool samples a few days apart in these special vials stored in the fridge with the saliva ones. Upon completion they were sent overnight to the lab.

    In both the stool and saliva, I had anti-gliadin antibodies= GLUTEN ISSUES. Went on gluten free diet and used a GI repair supplement powder mix by Metagenics, although there's others out there. It was a highly concentrated formula of mainly L-Glutamine and Deglycyrrhizinated Licorice.

    Also there was low gram negative bacteria (good flora) in my colon/bowel most likely post-appendectomy. The appendix actually harbors some of your beneficial flora.

    I took some probiotics and still do occasionally for maintenance.

    There was exocrine pancreatic insufficiency- low enzymes that are needed to help digest food properly. I was always bloated, gassy, feeling indigestion.

    I also had very low stomach hydrochloric acid.

    One doctor had tested me for H. pylori and put me on a PPI- Proton Pump Inhibitor. Wrong!!!! The indigestion/bloating from having too low of acid needed to break down and digest food can be confused with GERD, which is actually the opposite. The PPI was blocking peptic acid, but overall, I was supposedly becoming too alkaline. And the gluten I had been unknowingly eating had damaged the intestinal villi- the finger like lining that moves food along and absorbs its nutrients.

    So, I had a nice little cocktail of a few different Digestive Enzymes taken with meals, which included Hydrochloric Acid taken an hour after. It is important to not drink much water/liquid in the 30-60 min before meal, during and an hour or two after because it dilutes the enzyme concentration.

    As if that weren't enough, my IRON and Vitamin B-12 levels were so low my Naturopathic asked me in a whispering voice if I was a "boozer".

    I started monthly Vitamin B-12 shots and oral iron supplementation. It is important to take some form of Vitamin C at the same time as the iron. This helps with the absorption, which was part of the problem in the onset. In the US, I liked to take a brand called Vitron-C. It is a combo pill of both iron & C and it did not bulldoze my stomach nor require the addition of a stool softener like many of the other iron supplements out there. Remember, like anything with calcium, do NOT take your Synthroid, Armour, Cytomel, whatever within 4 hours of your thyroid meds-or it will greatly affect the absorbency.

    So, believe it or not, after all that, now I only take Armour 120mg or 2 Grains and Cytomel (generic liothyronine) 25mcg, occasional probiotics and enzymes.

    I had to piece together info and treatments from traditional and holistic medicine to get back on tract. Depending on your symptoms, it's worth looking into some of your basic vitamin and mineral deficiencies, like the iron-especially ferritin and iron binding, vitamin B-12, calcium and vitamin D.

    Hormone panels- Estrogen/Progesterone/Testosterone-yes, ladies/DHEA-precursor to testosterone. Cortisol, ACTH-Stim test.

    The GI issues and tests are a mixed bag. You don't have to have celiac to have gluten issues, which can be just as damaging. The most reliable way to test for that is an intestinal biopsy. The only solution is a gluten free diet, maybe a brief round of some oral steroids for the inflammation, I was given Cortef, but why bother- just cut out the gluten.

    Look into anti-inflammatory diets, fish oils and Paleo is great, no dairy and good protein.

    In conclusion, yes really, back to the topic of feeling crappy when your thyroid levels are out of whack and they keep screwing with your meds, present some solid info on the reverse T3, you may actually be getting too much T4.

    I'm not sure exactly what you're currently taking, but switching from just Synthroid 175mcg to Armour 120mg and Cytomel 20mcg has worked for me. I started this combo late 2010, the Armour dose stayed the same and I dropped the Cytomel from 35mcg to 25 a few years ago and 20 recently, so it has been relatively consistent. Thankfully.

    Wish you all the best and keep up the good work of advocating for yourself!!!

    :-)

  • What a reply b_mf!

    I'm still trying to digest it all ,even thought I read it the other day, its a masterpiece in exactly what I've been looking into. I have a FB friend from the USA who is currently an MMA fighter, he said exactly the same about watching my Testosterone and joint pain. Apparently, when you come off Testosterone too quickly, it leads to 'dry joints' and tendinitis /tennis elbow, something which is linked to being hypo. How come the consultants rely on vague explanations ofr serous symptoms and do not look a little deeper, even though they have all the tools and knowledge to do so.

    Im now currently on T3 80 mcg. Up 1/3 from my last dose of 60 mcg. Felt much better, my cognitive function has gone up, the dark black hole of sleep has left me. I used to go to bed and it was like falling down a hole, I'd sleep so long and heavy, it was almost like time travel, weeks would fly by. I'd like an endo to take an 'anti thyroid' med for a month, then say 'now mess with my levels!' :) Its just sooo debilitating when you're low, everything stops, your mind, life function, interaction, enjoyment ,everything is just dulled and a weak facsimile of how you remember it to be.

    Well this is the second episode of seriously reduced dosage/weight gain/correction. Hopefully now with the help of this site ,its the last . As I said, the endo has ordered a battery of tests to see how my Vit D is and other things are. Its a huge change from the original method of treatment, which was 'heres your tablets, goodbye!'

    Thanks again and I'll look deeply into your advice b_mf!

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