Need Your Expert Help: Very long story so I'll... - Thyroid UK

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Need Your Expert Help

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Very long story so I'll try to be as brief as possible. Started feeling exhausted beginning of year, wasn't sure if another sinus infection or something else. I had gained a little weight and noticed a lot of hair falling out. Allergist ran thyroid blood work, said everything "normal". (I just asked for copies of these tests yesterday and they were:

TSH 1.230 (range 0.178 to 4.530)

T4 7.2 (range 4.9 to 12.9)

T3 Uptake 30.9 (range 24.3 to 39.0)

Free T4 0.95 (range 0.80 to 1.73)

Free T4 Index 2.2 (range 1.5 to 3.8)

T3 Total 134 (range 72 to 180)

ESR (Sed Rate) 10 (range <26)

Next month I got swine flu and pneumonia and wound up in the hospital. They gave me prednisone for about a month. I continued to gain weight very quickly, face was swollen, became very foggy headed, bruised easily, had a bad temper, noticed my feet, ankles and legs were puffy and full of water, was very emotional and quick to cry, and got bad cystic acne. Saw Dr for my annual physical and he ran blood work. In Sept I went for a pneumonia shot and Dr commented about my weight. Asked me if I knew that we were supposed to eat less as we aged. I told him I barely eat, and never eat cookies, cake or desserts - and with the weight gain I've been more watchful than ever. He told me to start exercising. I asked about getting my thyroid tested. He said he already did that as part of Annual blood work in June. He finally said he thought weight gain was from prednisone. In November I went to pulmonologist and we discussed how I thought the prednisone was making me gain. I have gained almost 30 pounds within 11 months. He doesn't believe it's the prednisone. He wanted to run a few tests. Got results a few days later, but they only ran Free T4 and not TSH. Free T4 was 1.0 (range was 0.9 to 1.8) Said to come in and have TSH tested - if high then I have hypothyroid. I got the results from my blood work back in June:

TSH was 0.458 (range 0.4 to 4.2)

Total T4 was 6.4 (range 5.0 - 12.2)

Does a in-range but very low TSH and in-range but low Free T4 (November test) mean that I'm hypothyroid due to a pituitary problem? Just trying to make sense of this blood work. Just tried to make appt with endocrinologist and before they will give me an apt they want to review my bloodwork... so what does this all mean? Seems to me both in January and November blood work, that Free T4 is low. Looks like TSH went from mid-range normal in January, to the very bottom of the range by June. Can the prednisone be the reason for this? Can it suppress the pituitary's function? It is now November and I still feel markedly exhausted and still have all of the symptoms I listed above (weight gain, acne, water in my legs and swollen ankles, achy legs, brain fog (I keep searching for the right words to complete my sentence and it is horribly frustrating!!!)

Please help me figure out what could be going on so I can convince my new Dr to run the right tests and get me on some mess so I can finally feel better!!! THANKS! :-)

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Sounds like your adrenals have been very stressed, and using prednisone is like a sledgehammer. The body makes somewhere around 30mg of cortisol a day. Prednisone is about 4 times as strong, and taking too much of either can make you gain weight.

I've been on 20-30mg of hydrocortisone for the past 18 months after dexamethasone messed up my adrenals during cancer treatment. My body needs it while I work on recovering through diet, adaptogenic herbs and nutritional support, especially panthethine (B5). I've found when my need for hydrocortisone drops and I'm taking too much, I start gaining weight, especially around my middle, as much as 7 lbs in 2 weeks on the same diet, etc. Pulling back to a lower dose, I go back to my normal weight and the fat falls away.

You've had a lot of thyroid testing, but no free T3, reverse T3, and no thyroid antibodies, all of which are thermostat useful in figuring out what's going on with your thyroid. But you can't fix thyroid when your adrenals don't work. A saliva cortisol test would be useful, preferably when you've been off the prednisone for a couple days - don't quit cold turkey, but taper down.

Checking aldosterone, renin, ACTH, etc might be helpful, too. And possibly a DUTCH test (dried urine test of comprehensive hormones).

Supporting your immune system is important - you may have sneaky chronic viruses or bacteria percolating along, keeping your system stressed, like cytomegalovirus and other herpes family viruses, mycoplasma, chlamydia pneumoniae, etc. Taking mushrooms for immune support (like Stamets comprehensive immune support), high doses of vitamin C, vitamin D, and zinc, and a Stress B complex might be helpful.

And a high quality, nutrient dense diet with healthy fats, organic meats, wild fish, lots of vegetables, nuts, seeds, and berries and avoiding gluten and other grains would be very helpful. And moderate exercise every day, no endurance events but steady resistance training, yoga, and walking or light cardio is essential.

Be patient, but persistent. Sounds like its taken awhile to get into the situation you're in and it will take a while to get out. Yes, you can lose the weight, but you need good data to base a treatment plan on. Getting your entire hormonal system working and giving your body high quality nutritional support, exercise, and adequate sleep will help you get well.

You're not alone - good luck to you!

in reply to Learner1

You've hit it right on the head. I know the prednisone makes you gain weight in the middle section, just like you said. I've never really had a big stomach or ridiculously large breasts before (except during my pregnancy) and I am not liking it! I suspected that besides the weight gained during my time on it (March and most of April) but I also suspect that it has affected my adrenals/possibly pituitary too.

After being dismissed by my regular Dr, my pulmonologist tried to shed more light by running Free T4 and TSH -- but the TSH did not get run for some reason... but I now know after researching this issue heavily, that I definitely need the whole slew of thyroid tests, antibody tests and cortisol tests. Before I did my research, I had asked the pulmonologist if he thought the prednisone could've affected the adrenals/cortisol levels and he said yes while on it, but being that I've been off of it for over 6 months, he doesn't really believe that it is still doing so... instead of seeing a lung specialist for this, I'm trying to book an appt with the Endochronologist but they insisted I fax over whatever blood work I had to them, and they would determine when I could be seen... so ridiculous!!!

My Vitamin D level was tested and it is very low, and way outside large range: 18.9 (range is 30-100). I have started supplementing with D3 2,000 IU. My diet is also a problem since I am a vegetarian - so there's no heavy protein but my diet is pretty healthy for the most part. I can only eat cheese, as I am allergic to eggs and I don't eat fish either. I try to drink a little orange juice to get some Vitamin C too.

My immune system has definitely been down for quite a while - I had shingles (herpes zoster) in August 2015, and recent igG blood work shows my immune system is a little lower than the reference range. I took pre-natal vitamins since I thought they were stronger but haven't taken them recently. Should I?

I am not currently doing any formal exercise as the weather has gotten cold and u haven't had any time of strength to do that. My legs have started aching for no apparent reason and I can't even think about having the energy to do that. I'm exhausted after simply working my job all day... this really sucks! I went from being. High energy, well spoken Mom, working 2 jobs, to someone who can't sleep enough, who is chronically tired and can't remember words well enough to speak a few sentences without saying, "Unm, ummm..." because I can't remember a simple, common word. Oh yes, and I look like I eat small children bc I am so big... my self esteem is in the toilet!


Welcome to our forum and sorry to hear you are not feeling well.

Yes, elevated cortisol will lower the TSH and prednisolone (or other) will do the same thing.

Body inflammation (seen either as swellings or aches & pains) can lower TSH and T4 & T3 secretion. Gut dysbiosis decreases absorption of vital nutrients needed for good thyroid hormone synthesis.

Have you had Vit B12, Vit D, folate and ferritin tested ? ? People with low thyroid hormone can suffer deficiencies in these important nutrients. Have you had thyroid antibodies tested (TPOAb & TGAb) ? ? ..

Ask for " Free T3 " to be tested as this is the hormone that gives you well being. Also cortisol as when thyroid hormones are low, our adrenals will take over, eventually becoming compromised.

HI MelissaRz,

I had severe pneumonia myself two years ago and my whole body had filled with fluid, so much so, that I was drowning/suffocating with it. I am lucky to be here and my legs are still swollen and full of fluid, a lot of damage done.

I am not sure why you were on the prednisone for so long but to me, you have all the symptoms of underactive thyroid. (I am not good at reading results) When you are tired or feeling exhausted, do you find it physically hard to talk and difficult to find the words? The way I describe it, I feel like one of those toys that unwind when I am not on the right dose and get slower and slower, almost like being in slow motion. When I am on the right dose, I feeling fully charged!

The weight gain might be a combination of the thyroid and swelling on your legs. I surprised they haven't at least given you a mild water tablet at the very least, especially as you have had pneumonia and seen a pulmonologist. When you can, keep you legs elevated, preferably your legs about your heart level, when in bed. It makes a big difference gravity and gets rid of some of the fluid in the natural way.

From my own experience, the swellings in my legs and ankles, started when they dramatically dropped my dosage and my health suffered as a consequence. All these years on, I am back on my original dose. So I do believe most of my health problems were as a result of mismanagement, by my then dr's. Not impressed with the present lot either.

GP's will always come out with the eating less crap and exercising more. You have to have the energy to do that in the first place. I had one dr accuse my husband of being an enabler! (which he isn't of course), how I didn't clout her I don't know! ;)

I would definitely seek a second opinion and asked to be referred if need be. The brain fog, is so exhausting and depressing, especially if you are gaining weight for no reason.

Keep in touch, you are not on your own, we understand. Take care


Hallelujah! Someone who finally understands!!! YESSSSSSSS!! Everything you mentioned is completely ME!!! I feel like a sloth. I really cannot move fast, my thinking is VERY slow and I am constantly searching searching for words as I speak. I am normally a highly intelligent person with terrific vocabulary and verbal ability -- however since my hospitalization in March, I have become a literal idiot. I even took a new job in July only to feel overwhelmed and unable to keep up with the demands bc of the physical and mental demands. I resigned after 3 weeks. I've become my heaviest ever (only when I was pregnant did I ever reach this weight) and I am completely and utterly frustrated. This summer while everyone else was eating ice cream, I was NOT and was eating salad for my meals -- yet there were some days I SWORE I had gained weight over night. My weight gain has been predominately in my stomach and breasts, with just a little weight added to my thighs and arms. Just talking about it makes me emotional bc I have always been able to control my weight. I have incredible discipline and even quit smoking recently after smoking a pack a day for 31 years. I KNEW there HAD to be a reason for this. My stupid freaking Dr said, "Ehat do you think -- there's some mysterious DISEASE causing this?? Hardly. Did you know you have to eat LESS as you get older?" I started to cry. I told him everyone that spends any time with me routinely ask how I can go so long on so little food... Ge said, "Well as you get older you cannot control your weight by food alone. You MUST work out." I said not only don't I have the energy to do it, but I had already tried, walking several miles each day and watching everything I ate, and that nothing worked. I did not lose an ounce! He said work out harder. I told him I couldn't. I have terrible back issues that will require me to get a 4 level spinal fusion eventually - I wasn't looking to hasten that. In addition, since the swine flu attacked my lungs and I had pneumonia in March, my breathing is still not good. They say it's allergic asthma but I refuse to take any inhaler with steroids in the bc of what I've been going through, so my asthma is uncontrolled. I can't work out hard when I can't breathe! He told me to stop making excuses!

I simply cannot wait to get a full work-up from an endochronologist. I had to submit the bloodwork for an endo to review before they would give me an appt! Can you believe that??? All I want is to address and correct whatever is going on with my body -- why can't I get a freaking appt??? This is utterly ridiculous. I feel like u am being trapped to stay in this sloth of a body and it is a real punishment!!!

You saying about your back problems. I too have a really bad back, I did something to it when I was pregnant and since then the pain is incredible. I can't explain it, so it makes me immobile. I was told to get off my arse and walk, but I can't physically do it, as I get breathless because I am compensating for the pain. They blame the weight gain as the reason but it is not, although it won't help. However, 85% of the weight gain is mismanagement of my thyroid condition, that I am sure off. I was born with only a partial gland and had been on the same dose from a small child up to 32. Never had any health problems at all. But since they dramatically dropped my dose, a whole rake of problems have occurred.

When I was in hospital, I was also told to "take responsibility for my actions" - I like you, eat little, but when I am depressed, I nibble. I do not drink, smoke or take anything else, but because of my weight, I am categorised. I don't actually eat a lot at all. Just small meals. But occasionally, I might have the odd extra biscuit, or potato.

The extra weight, does have a tendency to go on the old tummy area, (another classic sign). Have they checked you for anaemia and B12 deficiency. They have very similar traits and seem to go hand in hand as you get old with thyroid conditions.

I have told one doctor to "F*#k off before now. I have also walked out of a Consultants office too. The ironic thing is, I am now back on the original dose, plus a little extra with the T3 tab, but won't get started on that subject. Guess what, I am feeling heaps better.

Totally get you and fully understand. No one understands, as I have said many times before, unless they have a thyroid condition.

Would you be able to afford a private consultation with a Endo?

Definitely push for it. You are entitled to a second opinion.

Keep in touch and don't be afraid to ask and question. We are here :)

in reply to MelissaRz

With regard to your lungs (and sinuses) you may benefit from some amino acids..

N-Acetyl-Cysteine or NAC is good as it thins mucous which also prevents helicobactor from adhering to our stomachs and guts. This is the first November I've had a few colds, but, no sinus or chest infection! I take it in the evening before bed as it also helps aid sleep. Very cheap too compared to some other supplements. (If you drink chicken broth you'll already be getting a lot of NAC. There is a lot of truth behind broth as a traditional remedy.)

in reply to HLAB35

What great information! Thank you! I will look for it... I do have chicken soup quite often so I guess I'm already getting some naturally, ha ha. I currently take Mucinex D which is a decongestant that loosens phlegm and opens up the sinuses. I am sad to say I normally get chronic sinus infections due to allergies. I had a bad one last June that I swore dripped into my chest and gave me bronchitis. The infection waxed and waned until I finally was so sick, I could only sleep an hour before coughing my head off. The allergist had prescribed antibiotics at least 3 different times but apparently it was the wrong antibiotic. A culture of the sputum finally came back when I had already been admitted to the hospital with swine flu and pneumonia, and helped to determine which antibiotic to use. After that, my hacking finally stopped!!!

in reply to MelissaRz

NAC is pretty effective for sinuses. It won't completely stop cold viruses or allergies, but it should prevent secondary infections. Going gluten free seems to have helped a lot - I used to get terrible hay fever when walking/cycling past wheat fields, so it may have followed that wheat proteins are a problem for me (my IBS symptoms have really calmed down). I also avoid monosodium glutamate to which I have a strong allergic reaction. I went lactofree for a bit, but am fine with dairy now that I drink homemade kefir which contains lactase enzymes and zillions of 'good' live bacteria.

in reply to HLAB35

The good bacteria are awesome for you and I'm sure good for your digestive issues. I'm eating Greek yogurt right at this very minute! 😊

in reply to HLAB35

I agree about NAC being brilliant stuff for lung problems, I take it myself when I have problems.

Just a word of caution though...

I've seen the abbreviation NAC being used for something other than N-Acetyl-Cysteine (can't remember what it was, sorry). So everyone should check they are getting N-Acetyl-Cysteine or N-Acetyl-L-Cysteine or N-Acetylcysteine rather than something else, when looking for NAC.

In addition to the previous advice which I fully support, consider potassium and magnesium levels as well as these are possibly low too (steroids make you excrete more of these vital minerals) and they're essential to keeping the heart healthy. When they prescribe steroids many health professionals don't warn us of the side effects which can mess up the adrenals and, arguably more critically, the immune system and heart.

in reply to HLAB35

At one point when I was in the hospital in March, my potassium became low -- what was funny is that I kept thinking about the vegetable broccoli rabe all day and asked for my husband to bring it to me for dinner. That was unusual bc I never crave it! But once I found out about my potassium being low, I googled broccoli rabe and found out it is pretty high in potassium! I was convinced that was why I was craving it. It was my body screaming out for help! I've recently had my serum potassium checked and it was within range. Only thing out of range was my platelets and red cell distribution width. I never knew the harmful effects that prednisone had -- but honestly, without it I probably would be dead right now. My lungs were so swollen and restricted, I couldn't get any air in. If I walked more than 3 feet, my respiration was so fast, I couldn't get the oxygen out of the air! So, as much as I blame the prednisone for making me like this, at least I am alive to be like this... now my quest is to get back to a healthy state, somehow...

Dates are good for potassium levels. Small amounts of healthy nuts such as walnuts, pecan nuts, hazelnuts are good for protein levels. Also cauliflower. My daughter is on a vegan diet, that is how I know. She has lost 5.5 stone in the last two years. Gone from a junky queen to a health guru lol ;) Looks good on it too. :)

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in reply to Hidden

Oh God, I sincerely hope you're wrong. The road has already been long.... I'm holding on by a thread sometimes and I am praying there is something they can do to make me feel well again. I can't remember the last time that I didn't feel sick and tired... and now I'm FAT on top of that. :-(

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in reply to Hidden

Funny you should say that bc my mother's sister had a scar on her neck, and I was told she had a thyroid problem. She passed from pancreatic cancer so I will have to ask her children, my cousins, what exactly happened. On my father's side, his sister (and her daughter) have also had thyroid problems so I guess I need to find out what exactly they have too!

in reply to Hidden

I'm so afraid the Dr will try to dismiss my problem bc my blood work is still within range. But first I have to get the darn appt for her to even do that! I'm being held back at every turn!

I recommend finding a functional doctor (these are private) or a functional nutritionist who can help you find out what's going on. I didn't get any help from doctors for my issues, but a functional nutritionist has been so super helpful. They can take tests to find out what's wrong. Normal doctors don't have these tests. I had Organic Acids urine test taken and it gave so many more answers.

Look into a Genova Diagnostics NutrEval FMV with amino acids test - they have a sample test on their website - you sound like you have a lot of issues and it's the most comprehensive nutritional test out there.

You'll also want good immune support, with mushrooms, vitamins C & D, and zinc.

I know you won't want to hear this, but you should reconsider eating meat. People are meant to be omnivores, and as some of the other commenters have pointed out, amino acids may help you. Also vitamin B12 deficiency can cause fatigue and be seriously detrimental to your health. There's also some good info on organ meats containing nutrients essential to proper hormone function. I'm not a fan of factory farmed meat, but eat humanely raised organic meat.

Also, find a doctor who practices functional medicine - could be an MD, but could also be an ND, DO, or DC.

Sounds like you have many issues, so be persistent, get good data, and work them one at a time.

in reply to Learner1

When you say mushrooms, is it nutrients derived from mushrooms - or better to eat them? I adore mushrooms with olive oil and garlic... yum! You may be right about eating a little meat, bug I just can't do it! Smells good cooking but won't pass the tongue... if I try, I vomit. Body simply rejects it! My blood tests with the exception of my thyroid crap was excellent in June. After quitting smoking my cholesterol improved -- the good cholesterol got higher and the bad cholesterol went down! 😊 A recent blood test was good with the exception of high platelets and a high red cell distribution width. And a low/normal Free T4... I just gotta have those tests run so I know what the heck is going on!!

in reply to MelissaRz

There are several types of mushrooms with various immune properties, reishi, maitake, etc. Hard to eat them every day. I take Paul Stamets Host Defense My Community. Stamets is one if the best experts in the world on medicinal mushrooms.

Elevated RDW can be a marker for celiac disease so being gluten free especially with a thyroid problem us a good idea.

As for your meat problem... get creative... you don't need to eat hunks of meat, but your body needs animal protein with accompanying nutrients. If you don't get the nutrients, your body won't work properly... I know it's not what you want to hear, but there are many former vegans and militant vegetarians who destroyed their health avoiding animal protein.

Your body is telling you something...I have no vested interest in the choices you make, but I can tell you I used to be 90% vegetarian and ended up with cancer and my mom was a vegan for 5 years and it destroyed her neurologically. We learned to eat meat again, though we're very careful about where it was grown.

Fish? Eggs? Collagen or gelatin? Milk products? Ground and hidden in a casserole, burrito, etc.?

As for vitamin D, an ideal is around 70-80. Many of us need to take 5-10,000 IUs a day to get there.

And, as you've been a smoker, you may want to look into cadmium toxicity. The NutrEval test I mentioned would test for it.

Good luck!

Hiya, for the stomach, sinus, asthma, and pylori issues you might want to read up on symptoms of low stomach acid. Indicators of that are low B12, B12 should be near the top of the range. and an (mean corpuscular volume) mcv over 85 on the blood test results.

Thyroid tests you need doing are TSH, FT4 FT3, general rule is TSH 1or below, FT4 60% of the range FT3 75-80% of the range. If you have hypothyroidism odds are you have zinc deficiency too, it's almost a 100% certainty, this also needs adequate stomach acid to absorb too.

Indicators your adrenals are involved is if you need to keep increasing your thyroid meds, and getting a crash back to square one, consider taking an raw adrenal glandular to assist the adrenals into getting back to normal

As for the brain fog consider taking 5-10mg of Pregnenalone, it's excellent for the brain and helps all the androgen/adrenal hormones. On this I felt loads better inside a few hrs, great for mood focus etc, bear in mind this is what was prescribed before cortisol came along as a singular hormone aid.

Your Vit D3 at 19 (mine was 23) doctor did prescribe 20,000iu a day for two months then retested, it got it upto about 80 so 2,000iu a day may not be enough fast enough.

Indicator For your weight is adrenals also, especially in you regions and mine, plus it's a given that people with hypothyroidism and or adrenal problems have a reduced metabolic rate of about 25-30% and some specialists state that they've hardly seen anyone with a daily metabolic rate of over 1200 calories for men and 1100 for women.

If the pituitary is involved you may have multiple hormone imbalances effecting the HPA (hypothalamus pituitary adrenal) axis plus you may have a damaged pituitary if you've had a head bump/injury

Hope this helps you all...

Finally got a call back from the Endo's office -- the girl asked if I would take the appointment with another endo in the office, because she said she wanted to make sure I was seen before the end of the year... my appt is 12/15 so hopefully they'll find out then what's going on with me! Thank God I found this site. You've all been so helpful!

Roadrunnergreg -- my mcv was 88.8 is that a good or bad thing? My b12 has never been tested...

I have two questions I need help with:

1- After your hypothyroidism was diagnosed and you were put on levothyroxine or T3 -- how long was it before you started to lose the weight you had gained? Did you have to work to get it off or did it just start falling off?

2- Do any of you get swollen, fluid filled legs? Today is such a bad day with that. Both legs, ankles and feet are holding water. Did that get better once you were medicated? Do you have to take a diuretic even after being put on thyroxine?

Thanks so much for the info!



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